Looking forward to my first Christmas

My dream tree I saw

This year will be my first Christmas in my new home and I’m actually quite excited. I haven’t always been a Christmassy person but it’s growing upon me; I now even have Christmas bedding!

I’ve been dreaming of my dream tree for years which I saw a few years ago in a local garden centre and now I have my own home I can finally have the tree of my dreams!

Back in October Diane (my PA) and I went to Brigg Garden Centre as they have a massive Christmas collection. Yes October is a bit early to be thinking about Christmas but we went then before the madness began and it would be a calmer and quieter-ish day out, which it was. There wasn’t too many people which made it more manageable with my usual outing coping tools I use which made it a nice afternoon out. 

They have different tree theme collections in little clusters around the Christmas World collection including my dream tree collection so I was totally in my element once I came upon that looking at different tree ornaments and home decorations. My theme is different shades of dusky pinks, white, iridescent and gold-ish colours; they all blend together beautifully. There were so much I could have put into my basket but I had to think about my bank balance as some of the baubles and tree ornaments had quite a high number on the price tag! Plus my tree will be something I will buy for and add to each year so I just got a selection of special baubles and tree ornaments I liked alongside some generic baubles that go with my theme. 

I also managed to find a tree I liked, I wanted a pre-lit one; there wasn’t a lot of choice but I like what I chose and not having to mess around with fairy lights will be a real bonus.

Since going to Brigg I’ve collected some more baubles and tree ornaments.

Loving ballet I also associate Christmas with ballet as I always watch the ballet shown on TV on Christmas Day as well as my association with The Nutcracker so I’ve got a few ballet themed tree ornaments too. 

I’ve also crocheted in the yarn colours of my tree theme some stars to hang on my tree. Then the same yarn colours I sent to my friend Becca and she’s kindly knitted me 10 mini stockings for my tree. Then also for my tree someone who I know has custom made me a tree decoration in my theme colours and the tree ornament says ‘first Christmas in my new home 2023’. Both that and Becca’s decorations are really special as they’re handmade and the new home decoration is almost a celebration of my first Christmas here. It’s a big milestone for me.

I’m now just worrying (a) about my tree fitting in my front room and (b) my tree looking too sparse this year, I just hope I’ve got enough decorations (and my theme stays on trend in future years too).

At the weekend Dad’s coming to put my tree up so Diane and I can decorate it on Monday. It was Diane who offered to help me decorate and I think looking at her own tree she’s very good at decorating for Christmas. I also enjoy decorating the Christmas tree too.

I’m going to have Christmas Eve day and Boxing Day here on my own here to rest. I’m going to wake up here on Christmas Day but at some point go to Dad’s. 

It’ll be nice to have my own space this year so I can get away from sometimes how hectic the house can get at Dad’s, plus with my brother staying over that just got hectic written all over it!

So yes my first Christmas in my new home!

How my new home is adapted for my needs

One of the reasons I moved into my own home was because I needed somewhere that would better meet my needs in terms of my chronic illnesses and disabilities.

Back at my Dad and stepmum’s there was many things I found inaccessible. Firstly and a big one one was the stairs; even bum shuffling up and down them was exhausting especially on my bad days. There was also nowhere to store my wheelchair in the house unless it was to get in the way. I also couldn’t have some of the adaptations I needed like grab rails, a second stair bannister or a key safe as well as things like a perching stool in the kitchen and my bath lift was a constant  annoyance for my stepmum especially when we had people like my brother come and stay over.

How my new home has been adapted 

Ways in which my new home has been adapted or equipment I now have to make my life easier and to support and enable me to live independently.

• My front door has a thumb lock - instead of struggling with keys (even with my KeyWing adapters on) I just have a large knob to twist to lock and unlock the door - I didn’t have this originally but when the door lock broke and the locksmith came he decided to install a thumb lock for me to make locking the door from the inside easier for me.
• Having an integrated kitchen in the front room I’ve come to love. Not having to to travel far around my bungalow is amazing and is so helpful (it’s also saved me having to buy an electric wheelchair like I thought I might have to have done). I only have my front room, bedroom then my bathroom to navigate (plus my garden). It just makes living on my own, especially with limited mobility and energy levels so much easier. I also now have a perching stool which I use in the kitchen area.
• In the kitchen I chose to buy an induction hob oven. Though my PAs/carers do most of the cooking I still like to cook and bake sometimes with my PAs and I got an induction hob because it was the safest option. It cools down very quickly after use, the risk of burning myself is lower, it’s impossible for anyone to accidentally leave it on among other things. The hob and oven also if the timer is set on it it will switch off when the timer goes off too. It was more expensive but it’s definitely been value for money especially when it comes to safety both to people and my home. 
• In my bedroom I have my profiling bed with hybrid airflow mattress. My profiling bed is similar-ish to one you’d find in a hospital. My mattress is a hybrid between a static pressure relief mattress with and airflow mattress function on top.
• To go with my bed I have an over bed table that part of it tilts so I’m able to do craft activities and write mail in bed. I waited to get this table until I moved into my new home.
• In the bathroom I have my bath lift. Without this I wouldn’t be able to get a bath.
• I also have the grab rails I need in the bathroom. There’s one near the toilet and another next to the bath so when I’m in the bath (I can’t tolerate showers) I can now use the grab rail to sit forward or change position etc independently.
• Throughout my bungalow I have smart lighting and I have a HomePod in the front room and in my bedroom. I rarely use the main lights because of my light sensitivity so I prefer my lamps. On my phone or through voice commands I can control the lamps in my bungalow. For example I can turn them on and off, to dim or brighten them or set how warm or white the glow is. Under my craft desk the plug there is a smart plug so to save me climbing under the desk all the time so like with my lamps I can control the desk plug on an off.
• To get into my garden I have a step and I have a grab rail there too so I have something to hold onto.
• When the fire service came to assess me and my bungalow they weren’t too happy with the door between my front room and my bedroom. In the night if there ever was a fire I’d struggle to get out quickly - in the morning when I wake up it takes me at least 15 minutes if not longer to sit my bed up in slow increments and at times my symptoms can make me immobile. The door would have only given me protection of 10 minutes, if that. There isn’t any legal obligation for housing providers to make changes such as install fire doors but thankfully I having an amazing housing provider and they’ve installed a fully fledged fire door for me.
• My rubbish and recycling bins are collected for me by the ‘bin men’ (I’m not sure what their official title is these days as it’s always changing) and then returned.

Settling into my new home

I’ve been living in my new home since April this year. I love having my own place to call home and the independence it brings and being able to do what I want; when I want (within reason of course!)

I wanted to move out for two reasons. The first was that it was my 30th birthday this year, back in June and I felt it was time to live on my own. I also needed to live somewhere that better met my needs in terms of my health.

It wasn’t easy finding a property as they all seemed to have or being given wet rooms whilst vacant and for me I needed a property with a bath due to my own needs. I looked at one property and I ticked all the boxes and it was spacious but the promised bathroom actually had a brand new wet room. That was the first property I viewed. I became number one for a number of properties but the vast majority of the time it turned out the listing was outdated and the bathroom was now a wet room or was having one installed or the area turned out to be less than ideal. I then bid for one property; I even called and begged my case for it but I was just told to call the council but then I dropped down to number four for the property so I thought no chance and moved on. 

I believe everything happens for a reason as a while later with that property now out of my mind I got a call asking if I wanted to view it as three people had turned it down. It was my second property viewing; my housing support worker couldn’t make it but I had my PA with me. I was a little unsure as going for a property is a huge commitment but my PA (who I’m really close to as she’s been my PA for a few years) urged me to say yes to the property. I can honestly say it was the best decision I’ve ever made and I’ve never looked back. I believe that first property fell through because this property is a million times better for me.

My Dad and stepmum did all the painting and decorating to get it ready for me. I’ve truly put my mark on my home now. Every time people come round they comment how very ‘me’ it is! The front room is all colourful and miss-matched. My home is also a homage to IKEA!

In the front room I have a little seating area, a craft area then a kitchen space. The latter I was unsure of the first time I saw it but I’ve made it work for me. It’s small with not much cupboard space so I’ve added an extra unit for extra space. In regards to my mobility I’m only a few meters from place to place around my bungalow which helps me so so much. Then the other room is my bedroom which is big and spacious with an almost en-suite like bathroom. Then off from my bedroom as a real bonus I have my own garden! Dad’s helping do my garden up ready for next year which will be lovely so I’m looking forward to that.

As well as my bungalow being better for my mobility I’ve also been able to have some aids and adaptations that I was in need of such as grab rails in the bathroom and my perching stool and my step and grab rail to access the garden. It’s also better having access from both sides of my profiling bed for PAs/carers as well as nurses. I’ve also made my own accommodations such as smart lighting and smart plugs which I can control on my phone or through my HomePods with verbal commands. I’ve also been able to install safety features for my home both for myself but also in case of emergencies which put my mind at rest.

I’m much happier living here. It can be tough at times I won’t lie especially on my bad health days and it doesn’t help that my care situation isn’t sorted properly so that can be challenging at times.

Sometimes it’s the little things I like about living on my own like choosing my own laundry products and choosing what food I have in. I will say I’m not a fan of doing the laundry (thankfully the cleaning is left to my cleaner) but I like it when I have my home to myself and I like the peace (esp when my neighbours are out and therefore it’s quiet) and just pausing with a mug of coffee or crafting in bed or in my craft corner or curling up with a book or when we had nice weather swinging on my swing seat in the garden.

I’m really looking forward to my first Christmas in my new home. It’ll be nicer to have a quieter Christmas too without the hecticness that goes on at Dad’s. 

I can see a future for myself here which is so lovely and I settle in more and more as time goes by.

Tour of my new home - video on my YouTube channel 

My front

Book review: “My Beautiful Struggle” by Jordan Bone

Rating: ★★★★☆

At 15 Jordan was in a car accident that left her a quadriplegic. When Jordan first had her accident it was unknown if she would ever be able to move completely and would be laid in bed with her head in a halo keeping her head, neck and the top of her spine still. After an uncertain but successful lifesaving surgery to stabilise her neck fracture and lots of rehabilitation she began her new life. Thanks to the surgery she regained movement in her arms, some movement in her wrists but her hands remained clenched shut with the only limited use of her thumbs.

Jordan was determined to relearn how to relearn how to apply makeup and this became part of her rehabilitation. Let’s just say she’s totally nailed it when it comes to makeup. Yes she has to apply makeup a bit differently using her mouth to aid her hands but her makeup looks on her tutorials on her YouTube channel are AMAZING!

Each chapter of her book is named after a makeup product or look and Jordan has really cleverly woven in the theme of what she writes about in that chapter with its relation to the makeup product or look. 

What I liked about this book is that Jordan touches upon her accident and its lasting impact but she doesn’t overly focus on it. The book isn’t about her disability but it’s about her life, yes her injury plays a part but she also writes about her life in general and how her disability hasn’t stopped her from becoming successful through her YouTube channel and then onto collaborating with big brands such as being whisked off all expenses paid to NYC by the brand Urban Decay! Jordan has worked hard disability aside to become a successful young woman and her determination to be successful. To not let her disability beat or define her shines throughout her book.

In the book she also writes about the close relationship she has with her family and her boyfriend. It’s also clear that family means a lot to her. She even has her own purpose built home in her family’s back garden.

Sometimes she is asked about her disability such as about her hands in her makeup tutorials on YouTube as she edits out how she really does her makeup and just instead focuses on the look she’s filming. Jordan does touch upon the affects of her disability in the book such as needing carers when she travels to events and how her PAs do her hair for her as this isn’t something she’s able to herself. I could totally relate to Jordan on the the importance of having PAs for important care tasks but how it’s also wonderful to have carers who are also good at styling hair too!

It’s such a wonderful and uplifting book with many motivational passages written by Jordan that really clicked with me. It’s definitely not a ‘woe is me’ book about disability like some similar books to this that I’ve read. Jordan truly has embraced life to the fullest and has come out the other side going onwards and upwards there is no stopping her and I’m sure this book isn’t the end of her story.

One of the other added extras that I loved at the end of the book was Jordan’s beauty tips for skincare and makeup with tips and product recommendations. It’s definitely inspired me to get more adventurous with makeup and try out new looks and products and techniques.

I’d highly recommend checking out her YouTube channel and here’s a link to buying her book - it’s also available on Kindle.

    

Discovering iris folding

An iris folded card made by myself

I’ve recently discovered iris folding and I’ve fallen in love with this crafty activity. What’s great about it is that it is very easy and simple to do and it doesn’t require much energy.

I’m always on the lookout for low level activities and iris folding definitely is one. Another fantastic thing about this activity is that I can easily sit in bed and do it at my over bed table. I can also pause part way through as long as I don’t disturb my project on the template. I’m always looking for activities I can do in bed as I spend a lot of time here (like now) as I’m often limited with how long I can sit at my craft desk or in a chair for due to my different symptoms, especially relating to my M.E.

I got into iris folding when I came across the Instagram account @prettyinpaperbyb and then my friend and pen pal Laura sent me an iris folded card with my initial ‘N’. A little while later I decided to by a beginners kit from @prettyinpaperbyb and after making the two cards I had fallen in love with iris folding. It was was so simple and easy to do and the instructions were easy to follow (when you actually follow them - I forgot on the second card and had to restart. I thought I’d got the hang of it but looking at the end result I realised I’d gone totally wrong!) Soon after that I bought the deluxe beginners kit (which I’d highly recommended buying you literally get everything and more to start iris folding) and the rainbow card making kit too as I love rainbows. 

So much thought goes into these kits in terms of what is included inside them, they truly are so lovely. Plus you’re supporting a small independent business. Also what I learnt from buying the kits is Bethan who is behind @prettyinpaperbyb has CFS, Chronic Fatigue Syndrome herself. As a child her grandmother taught her iris folding and when she became ill she picked up this craft again to occupy herself. Today she’s turned it into a small business selling different kits, digital patterns, and other products for iris folding. Bethan also posts videos on social media of her creating different iris folding designs as well as tutorials.

If you’re a crafty person and you’re looking for something new to try or you’re a crafty person with limited energy I’d highly recommend trying out iris folding. My advice is to start off with beginners kit from Pretty in Paper by B - there’s lots of kits to choose from ranging in different budgets and to create different projects too. I’m sure you will enjoy this creative activity as much as I now do.

Decode M.E.

The Decode M.E. study is the world’s largest study into M.E. 25,000 DNA samples are being taken from people with M.E./CFS from around the UK with even more data from people being collected through questionnaires. The study has been expanded to now also include up to 5,000 DNA samples taken from those who have developed M.E./CFS after contracting the COVID-19 infection.

The Decode M.E. study is being led by Professor Chris Ponting who is part of the Medical Research Council, Human Genetics Unit based at the University of Edinburgh.

The aim of this research project is to find out if there are any genetic causes as to why people develop and become unwell with M.E. - Myalgic Encephalomyelitis also known as CFS - Chronic Fatigue Syndrome.

Funding has been secured for this largest ever study into M.E./CFS to see whether M.E. is partly genetic in nature and, if so, this will help researchers pinpoint what causes this illness. The study will also hopefully help scientists better understand M.E./CFS and ultimately help find treatments for the disease.

There is still time to participate in this study. The closing date for participation closes at 5pm on the 15th November. Click here to participate.

To find out more go to the Decode M.E. website and also check out their FAQ’s.

In time I look forward to the results of this study and seeing what comes of it. Questions such as did I have a genetic predisposition to developing M.E. and if so what triggered the genetic response to me getting M.E.? Also if M.E. is genetic where did it come from as no one in my family as far as I’m aware has M.E./CFS. I also hope that the research helps to develop some effective and targeted treatments specifically for those with M.E./CFS and the research with also help healthcare professionals better understand M.E. and it will generate in time better access to treatment and care as currently it’s a bit of a postcode lottery. I’ll also be interested to see if the researchers come up with correlations to other illnesses some people like myself develop.

Winter worries

As the weather is slowly getting colder there’s a big worry on my mind. I’m new to living alone and this will be my first winter paying bills. Many people are struggling with the cost of living in different ways, single parents, those on a low income, job seekers and those with disabilities.

The charity Scope in recent 2023 finding found that “On average, disabled households (with at least one disabled adult or child) need an additional £975 a month to have the same standard of living as non-disabled households.” - Scope, Disability Price Tag 2023

Disabled people incur many extra costs, varying from person to person but many disabled people find that come the colder months they incur extra costs to stay warm because of their health.

For me the cold makes my symptoms worse. My joints are more painful, my muscles go into spasm more and just generally my pain levels increase and I feel a sense of malaise. It’s also important to have a warm home because I have autonomic issues so my body struggles to regulate its own temperature, in the summer I can’t cool down so well and in winter I can’t warm myself up so well. Obviously I dress warm in the colder months, I get my carers/PAs to make me hot water bottles and I microwave my warmies as well as snuggling under my heated blanket and taking other measures to stay warm that cost less. I’m so grateful for the cost of living payments as they will help a lot hopefully if/when I get them to put them on my gas and electric meter especially on my gas meter to heat my home. It also helps that this is a new build bungalow so it’s built to be warmer and more energy efficient.

It’s still a worry though over affording the heating bills over the next few months on top of all my other expenses and additional disability expenses. I know I’m not alone in my worries over the cost of living and also the additional disability price tag burden. It doesn’t leave much room to put money aside to save up.

My main worry is falling into debt over heating my home when I know that medically I need to have a warm home to stay well. I also worry about what will happen when the Cost of Living payment runs out and having to budget to put money on my meters.

At the moment I’m managing but it’s only going to get colder from now on, I just hope I’ll be okay.

Life with pain

September is nearly over so before it ends I’ll quickly write a post for Pain Awareness Month.

The hashtag #LifeWithPain that is being used for this year’s awareness month sums up my life really well. I’ve lived with pain to one degree or another my whole life. I can’t remember what’s it’s like to not be in pain; being in pain is my normal.

When I was a child I often complained of being in pain, especially in my back and joints. I was diagnosed with hyper lordosis, a high acute curvature of the lower spine but the vast majority of the time Drs put my complaints of pain down to just being growing pains. Looking back now I can see that these were early signs of my Ehers-Danlos Syndrome.

I find it hard to score my pain when asked because my normal daily pain would score high and I just try my best to get on with it alongside the pain. So when I’m say in the Emergency Department and I’m asked to score my pain it’s hard as I score my pain differently to someone who doesn’t experience chronic high pain levels. Another thing I do is I always save my high pain score, especially 10 in case I ever experience worse pain in the future even if I feel like 10 at that time, just in case. What I find really annoying is my local hospital now use a 1, 2, or 3 pain score - how the heck do I give a score on that?! 

When I talk to people about living with chronic pain and the pain that I live with people ask me things like ‘how do you still manage to get out of bed’ or ‘how do you still manage to function’? Often it is hard to do both of those things but I have to live and I have to have some sort of life, I’ve just learnt to live alongside my chronic pain and find ways to have a life but sometimes it does affect my quality of life as well as my mental health.

My pain varies and I do get my non-functioning days. Most days I just about manage to function due to a mixture of different medications, aids and the support and enablement from my PAs/carers. I’m also under pain specialists at UCLH which I’m really grateful about and they’ve helped me to learn to live with my pain and find ways to make it more manageable. It’s still incredibly tough and I always flop at the end of the day with growing levels of pain.

I experience a multitude of different types of pain. You name it; I feel it. From joint, nerve and musculoskeletal pain to chronic headaches and migraines I experience it. This is because all of my chronic illnesses come with chronic pain and with some illnesses the symptoms include different types of pain. The unpredictability is hard; not knowing how I will be one day to the next or how severe my pain will be as well as experiencing multiple types of pain at once.

Often medical professionals struggle to understand chronic pain especially as I have rare and/or misunderstood illnesses and this has led to many negative experiences in the past. There have been some good experiences but most medical professionals don’t experience chronic pain for themselves so how can they relate to patients who experience chronic pain and how can they empathise to give them the care they need in an understanding and compassionate way? I definitely think more training and education on chronic pain is needed for medical professionals. 

I believe that more professionals and decision makers who allocate care services need to better understand the needs of patients so we get the care we need both in hospital settings as well as at home in the community. I also think more research is needed into effective treatments and care guidelines needs to be improved.

Personally I don’t believe in medicine alone. I do a lot to supplement the medications I take for my pain. I find regular massages help, these are done by a lovely lady called Hollie who is trained in understanding chronic health conditions so the treatments so gives me are more targeted at my symptoms rather that my massages being a spa experience. I also find relaxation and mindfulness meditation helpful especially resting with soundscapes. Distraction is also a good tool as is getting enough sleep at night and staying hydrated. Also just listening to my body and what it’s telling me. Pacing and activity management is also key. I also enjoy a hot bath too. There are many things that I do daily to help me live with pain. 

Mobility aids can be pretty too

I think for a lot of younger people (and maybe some older people too) the standard NHS ‘greyeige’ for most things isn’t that attractive. However we still need mobility aids from crutches to walkers and wheelchairs to assist us with our mobility to help us get around and be mobile and have a sense of independence and freedom. This is really important especially when your mobility is restricted because of your chronic illness or disability. For some people having a nice looking mobility aid can help them to accept the use of a mobility aid therefore use it. I’ve seen it before on social media where people have accepted the use of mobility aids better when they are more ‘fashionable’ or accessorised or less clinical looking like NHS issued equipment. From choosing a coloured frames for wheelchairs, having a coloured or decorative walking stick or pair of crutches or accessorising mobility aids. You can even buy accessories for mobility aids or find ideas online to jazz up mobility aids. But as pretty as your mobility aid is it’s still serving a purpose, it’s assisting the person’s mobility.

Ever since I’ve used mobility aids I’ve had pretty looking ones. I’d love a wheelchair that would better meet my needs but also the perks of not having an NHS issued wheelchair is the customisation options. However I have accessorised my NHS wheelchair to represent ‘me’.

I think when I first started to use a walking stick having something that was pretty helped me come to terms with the fact that I was starting to struggle with my mobility and I needed something to assist me with my mobility. Now if I could afford it I’d have multiple pairs of crutches to go with my outfit of the day but sadly they’re too expensive for that as is a lot of disability related things (being disabled really is so expensive, but that’s a blog post for another day). 

However not only are my crutches fashionable in terms of having a pretty design on them (designed by by me so they are utterly unique) they assist me with my mobility. Having pretty crutches just helps me express myself whilst at the same time having them to assist me with my mobility. I think I feel more comfortable and happier using them than I would a pair of standard issue NHS crutches. Though not fashionable (I’d love to see them in more colours) are my flexyfoot ferrules. Since getting them they’ve really helped give me more stability and grounding when walking.

Some of my wheelchair accessories are purely cosmetic like my Izzy wheel covers. Most recently I bought some RehaDesign push rim covers. Usually I’m reliant upon someone else pushing my chair for me because I don’t have the strength but these push rim covers are amazing! They give me the extra grip to be able to push myself a bit more myself independently from someone pushing me. They even work okay to a standard in wet and colder weather too. The push rim covers also help me navigate slopes and ramps too. They’ve really transformed my experience of being a wheelchair user. So not only do they add a pop of colour to my chair they’re giving me more independence and freedom which is what mobility aids are there to do; it’s just like with my crutches nicer to have something that’s pretty and expresses who I am.

Mobility aids don’t have to be drab ‘greyige’ they can be pretty and functional too doing the job they’re designed to do whilst at the same time expressing our different personalities, favourite colours or outfit choices. They also help give people the confidence to use mobility aids too, so mobility aids can be functional and pretty too.

 

Mobility aid purchase links

• Cool Crutches
• Flexyfoot Ferrules 
• Izzy Wheels
  
• RehaDesign push rim covers

Fundraising update

So far this year I’ve managed to raise £64.50. 

I’m quite proud of myself as I did take a two month break when I was moving.

I’ve now made a start on Christmas cards so I can pace myself making them as well as taking pre-orders. 

I’m excited to see what my total raised is at the end of the year and donating that to my two chosen charities: Smile for M.E. and Action for M.E. I’ve already decided to continue selling cards and fundraising next year but for some different charities, (I haven’t decided which yet) but I love having an excuse to make cards and support charities close to me at the same time.

More about my card project

Some of the cards available to buy

Framework housing support

Last year when I applied to the council for housing because I was identified as ‘in need of support’ I was allocated funding for housing support. My needs were put together and put out to different housing support organisations for them to decide if they could help me and then I was contacted back with the list of five organisations that were offering me support. Some housing organisations and charities mainly worked with those who were homeless or who had mental health or substance misuse issues and I didn’t fall into this category as someone with physical disabilities. I didn’t know anything about them other than the charity’s name but I chose to be supported by Framework.

My first housing support worker at Framework was Lotti who was the team leader, she was very flexible with the support she offered and we got on well. She helped me get set up with the council’s housing list and she put together the paperwork and evidence for what category I’d be put into for housing. Thankfully first time round I was put as top priority for housing and I feel this was based on the strength of Lotti’s work.

The initial work Lotti did for me was offer me 1:1 support, help me check the list of properties I was eligible to bid for, have a drive around properties I’d bid on and view properties with me among other things.

Lotti left Framework just as I got my bungalow but she was really happy for me as she knew the struggle I’d gone through to get a property with a bath as she liaised a lot on my behalf on this issue.

When I got my bungalow my Framework support worker went through the tenancy agreement with me so I understood what I was signing. 

Honestly, without Framework I would have really struggled to know what to do to set up a new home. They helped me find and set up with utility companies, apply for my council tax on my behalf, know where I can get reductions because of my disability, apply for my bins to be collected, have the fire service assess me and my property, sort out issues with my TV license and lots more. Even just knowing that they are there on the end of the phone is helpful and means a lot, like the time I called Rick in tears because a lady from British Gas got me so upset I hung up and I just immediately called him after hanging the phone up.

Having M.E. means my energy is limited so having people like Lotti, Kim, Sarah and Rick and others at Framework speaking and acting on my behalf is so so helpful to my health as I don’t have the energy they have to make phone calls or write letters or fill out forms. I also have dyslexia and that combined with my brain fog I often struggle to understand the housing related paperwork I get sent. For example today I kept a letter from my water company that I didn’t understand to show to Rick when he came round so he could read it and explain it to me. Other times it’s simple support that helps like someone finding my bin collection rota so I know what bin is being collected on what week that saves me time and energy looking for this information myself that really helps.

I’ve been having lots of problems with British Gas. First it took a few attempts to switch over to them and then it took Rick a few attempts to switch me over to pay-as-you-go. Ricks also spent many hours on the phone to them for me with some successes like getting my money back that they took out my bank unnecessarily but most of the time we’ve (or more so Rick has) been been banging our/his head against the wall with the company. All I wanted was a plug in display box, the British Gas app displaying my meter reading and easy top up on my phone, instead I have non of this despite Rick’s best efforts to get me this. The only time I can get meter readings is when I have a visit from one of my support workers from Framework who go outside and physically check my meters for me. One time my gas was very low and could have fallen into debt, even today if Rick hadn’t checked my meters my electric meter could have easily fallen too low and it does get worrying not knowing my meter readings easily and accessibly. The whole situation is very stressful so I’m so grateful that I have the support of Framework and especially from Rick who is on the case who is now writing a complaint letter, something I’d really struggle to do if I was on my own. In fact this whole situation with my gas and electric I don’t know where I’d be if I didn’t have Rick and everyone else at Framework. 

It’s also good to know that I have that continuing support from Framework and they can support me in whatever shape or form I need. It’s helped me settle into my home and I know Framework are there to help me live independently and thrive and that’s just what they are doing. I really can’t thank them for all their support so far and their continuing support. 

▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️▫️

To anyone who is thinking of getting their own property, is in the process of looking for a property or has just moved into a property and is struggling or feels they may benefit from housing support I’d strongly recommend contacting your local council’s housing department and asking for housing support.

Severe M.E. Awareness Day 2023

*TW*

Living with Severe M.E. is incredibly difficult. 1 in 4 people with M.E. will be affected severely or very severely.

My days are full of unpredictability as I never know how my internal battery will last. Many people think that M.E. is “just about tiredness” but M.E. is so much more than that. M.E. affects everyone differently but for many of us, myself included it affects many parts of our body. M.E. affects my immune system, my cognitive function, my nervous system, my muscles, I experience different neurological symptoms, my autonomic system is affected and among other things my nutritional needs.

This years topic focus for Severe M.E. Awareness Day is on malnutrition in people with severe and very severe M.E. Though I’ve been fortunate to not need artificial nutrition such as from an NG tube because of my M.E. my M.E. has lead me to lose weight and be under a dietician and be prescribed supplement drinks because I struggle to eat enough. I’m also prescribed vitamins and other supplements. Often I find it hard to find the energy to eat and I lack an appetite and I can only eat small portions. Added to that my medication and symptoms such as pain and headaches/migraines make me feel nauseous making me feel less like eating even more, even though I know it’s important to have meals and snacks. Sometimes I’ve also needed my carers to cut my food up for me, and occasionally when I’m really not well feed me when I’ve been unable to do so myself (a task I find difficult but I’ve always been given as much dignity and choice as possible when I’ve needed help with eating) and also assistance with drinking, again difficult like with eating but always done with care. I also have allergies and intolerances which have increased since I became ill and I rely upon my PAs or carers to make my meals and often my drinks too. Ideally meals need to be cooked from scratch but with my current care situation this isn’t always possible meaning I don’t always get the nutrition I need. 

Unfortunately there is a huge lack of misunderstanding around nutrition and malnutrition in people with severe and very severe M.E. When I was under the dietitian for my weight loss the dots weren’t put together between the difficulties I was having with eating enough nutrition, my weight loss and my M.E.; even I didn’t join the dots until I started to see others with M.E. also struggling with nutrition and with this years Severe M.E. Day campaign. Due to this gross lack of understanding people with M.E. are being poorly treated; passed off as having an eating disorder when they don’t; denied the care they need such as artificial nutrition and supplemental fluids because they are too unwell to eat or drink. It’s now time that healthcare professionals understand the difficulties people with severe and very severe M.E. have when it come to their nutrition before it’s too late. Also social workers need to give adequate time in a person’s care package for meal preparation, shopping trips and even time for carers to help a person eat and drink such as by assisting them to drink, cutting food up or feeding a person if needed. Assistance with eating and drinking requires extra time, like a lot of things for people with M.E. you can’t rush tasks, plus who wants to be fed quickly gobbling down food when you’re already struggling to eat in the first place?!

Living alone with M.E. & other chronic illnesses

For part one on my home story which covers the struggles I went through and the many let downs I had before my new home finally was mine check out my blog post ‘Welcome to my new home!’

If you’re new to reading my blog I have several chronic illnesses: M.E. - a neuroimmue illness, Ehlers-Danlos Syndrome - a genetic connective tissue disorder, FND - a neurological disorder, amongst other illnesses and other health complications. 

My health especially having severe M.E. does make life living independently a HUGE challenge but I’m finding ways to make living on my own work. (I wouldn’t still be here if it wasn’t for my care team).

I thoroughly love living on my own despite all the challenges I’ve had; not just with my health but I’ve had a lot of support from lots of different people. The charity Framework have been amazing offering all sorts of housing related support and beyond. My Dad and stepmum for getting the bungalow ready to move into and. My Dad’s continued DIY skills and grass cutting. My Occasional Therapist (OT) for arranging the adaptations and providing equipment. Then come my PAs and carers, I honestly wouldn’t be living here without their support and enablement to have the life I have. 

One of the main challenges is that thankfully I got the increase in my care package that I needed. - With my M.E. everything has to be paced so things take longer so I needed more hours than would normally be given.*

One big problem I’m having is that for a long time now I’ve been struggling to employ an additional PA and I thought that the additional hours the job was offering would be more encouraging however I’m still without an extra PA (or two). In place of that I’ve had to rely more heavily upon my care agency to cover my evening care and the 3 day weekend I don’t have a PA for. It’s not ideal but thankfully it’s a good agency and they try to give me the same few carers were possible. However the time I have with the agency isn’t the full amount of time I’d have with a PA (for example in an evening I currently only get 1/2 hour of care but with a PA I’d get 1 ½ hours) so I can be difficult some days especially on my bad days when things need to go at a slower pace, I have a seizure or I’m needing more support with additional tasks. 

Tips for living alone

• Plan ahead, if you think you may need care or your care package increasing contact your local adult social care services and ask for an assessment way before you move in. This gives you extra time for an assessment to be done and for care to be organised.
• Also ask adult social care to refer you to the OT Housing Team for an assessment so that when you do move an OT can assess you for what you need from a home and provide a housing letter detailing what your housing needs are. Then once you’re in your new home they can arrange and provide you with the aids and adaptations you need. They can provide you with advice on any other aids or equipment you may benefit from buy purchasing yourself such as kitchen aids for cooking. They will also work with your housing provider or landlord if needed. The OT can also arrange for any hospital equipment you have at your previous address to be moved to your new address.
• When you start looking for a property consider asking for support from a housing charity who can can provide housing related support, such as helping you view properties, understand signing tenancies, organising your utilities, supporting you with any problems etc. The list really is endless with what they can do and from my personal experience their support is a lifeline.
• When getting ready to move have a really good clear out. See it as a fresh start. I got rid of so much stuff!! Some just got thrown, I donated a lot to charity and a lot of my craft things I donated to the hospice for patients to use. I really did downsize!
• The minute you think of moving out save save save!!! Moving into your own home is expensive from needing cutlery to furniture but just start with the essentials first. Thankfully I was fortunate that I already owned a lot of my own furniture. Charity shops are also great for second hand furniture and even white goods to get you started.
• Take your time buying things. Online shopping is a good way to save energy especially if going to the shops isn’t possible for you. Also I planned the look of my new home on Pinterest; this was very fun but it also gave me ideas for my new home like the IKEA furniture combo that’s now my craft desk.
• Pace out the moving process and gather all the help you can. If you don’t have many people you can call upon you can if affordable consider getting a handyman (or woman) - there are some out there that are DBS checked for added reassurance. You can either pace out the packing and then move in or this is what I did:
• I paced out and got support organising and going through and packing my belongings. When packing boxes I labelled with the contents and the location of where they’re going within my new property.
• I slowly moved my belongings into my new property once it was carpeted and repainted.
• I got a removal company to move my furniture and the remainder of my boxes.
• Once my furniture was in I got help to start unpacking even before I officially moved in
• On the day of moving in was the day my bedroom blinds was fitted and my hospital equipment was moved for me.
• Moving this way really helped by doing it in little stages. I was desperate to move in as soon as I could but pacing it out even though it still caused a major crash but it was very beneficial and I’m grateful for all the help and support I had.

Things will be difficult initially, nearly three months in I’m still trying to figure things out and it’s definitely not been plain sailing. However for the ten years I’ve been chronically ill now this is the first time I’ve actually had something to celebrate and this is is something BIG to celebrate! I often look around my little bungalow in amazement that I’m still here. I’m happier and for my health my little bungalow is much much better for me. No more stairs or long distances and I have the grab rails I need and odd aids like my perching chair. I’m just a couple of meters from my bed to the bathroom which helps. Then the front room has an integrated kitchen area which at first I wasn’t sure about but it’s worked out amazingly as there’s less walking I’m just a short distance from my bed to the kitchen and when I can I try to sit in the front room or at my craft corner on my good days for a short while so I’m not in bed all day. I also feel I can be more myself like when I’m not feeling well I don’t have to hide it and I can do what I want when I want (within reason of course!) 

I’m still yet to re-find a daily plan that works so I keep overdoing it and forgetting to time activities so I go over my activity limit and get payback with vengeance. I think my body is still trying to get over the big M.E. crash from moving and it’s just taking time for my body to resettle. This is hard as I can’t just stop to recover as there’s things to do. I’ve done some things to manage my M.E. and other illnesses better such as I now have a cleaner and I try and give my PAs and carers more house tasks giving me time to rest as well as pacing down when I’m on my own. I’m sure in time I’ll find my way and what works it’s just a case of trial and error as well as allowing my M.E. to settle down.

M.E. Q&A - Questions from Instagram followers

What is the one thing M.E. has taught you?

Who my real friends are. I’ve lost a particular friend who I thought was “my person” (something from one of my favourite shows Grey’s Anatomy) but it turned out they wasn’t the person/friend I thought they were. Now though I feel as though I’ve found ‘my tribe’. A group of amazing people, pen pals and friends who I feel are a positive influence within my life and on my social media. I feel I can turn to these people, talk to them, talk to them, turn to then with my questions or for advice, have a rant or a ramble or just talk about the things we have in common which has nothing to do with medical stuff. For example books, pen palling, crafting, pets, home decor and much more. These people also fill my Instagram with positive things (and funny animal videos!)

A lot of ‘my tribe’ also have chronic health problems/disabilities including M.E. but we don’t let our health define or beat us but it’s good that in the background there’s that understanding of illness and all that comes along with it.

M.E. has also taught me gratitude. I have a lot of thankfulness for everything in my life big and small. A letter or message from a friend, the enablement from a PA/carer to have a hot bath, drinking a nice cup of coffee, going outside in my wheelchair with my PA for a walk, a hug from my Dad, the fact I’m in my own home (!) these are just a few of many things I am grateful for.

What is the hardest part with M.E.?

Feeling stuck with my life. I’ve been ill for ten years now and I’ve had little to celebrate. I see people around me my own age achieving things like my brother graduating from University, going a masters, getting a job getting promoted and so on and I’ve just gone nowhere at all.

However I now do have something HUGE to celebrate as I’ll soon be moving into my own home! I feel really proud of myself for this as it’s been a difficult journey and I know it will be challenging but there will be so many positives and many achievements.

Loneliness and isolation is also another hard part of having M.E. especially because my M.E. is severe I’m on the whole housebound so I can’t go out and socialise and virtual events are too tiring for me.

What symptoms do you experience with M.E.?

A lot of people think that M.E. is just about feeling tired but it’s much much more than that. The symptoms that I experience vary in severity throughout the day and some symptoms affect me more seriously than others. I also have co-morbid symptoms annd other illnesses that have been brought on by my M.E.

My ‘main’ symptoms I experience include:

🩵 Hypersensitivity, especially to light, noise (and sometimes touch and smell too).

💙 PEM/PENE - Post Exertion Malaise or Post Exertion Neuroimmune Exhaustion - sometimes even the smallest amounts of activity can bring this symptom on. It’s a delayed reaction symptom for me it’ll come on the following day and you don’t know the extent of how hard it will hit you. Basically after exerting myself I’ll feel generally unwell; as though I have the flu with cold and flu-like symptoms and I will feel utterly exhausted and weak and my other M.E. symptoms will flare up too. It can take a few days or a few weeks or even months to recover.

🩵 Payback is a more instant reaction following doing any sort of activity so pacing and activity management is really important. I’ll experience a flare up of symptoms immediately after exerting myself as opposed to PEM/PENE which is a delayed reaction symptom. Sometimes even the smallest amount of exertion such as going to the bathroom can (a) feel like climbing a mountain and (b) it will cause me payback on a bad day.

💙 Pain is a big symptom for me. I feel different types of pain all the time - muscle pain including spasms, nerve pain including neuropathy and intense pins and needles and like electric shock sensations etc, joint pain as well as headache and migraine pain and abdominal pain and co-morbid gastrointestinal problems such as IBS and other issues. My pain is widespread throughout my whole body but my legs are the most painful part of my body when it come to my M.E. pain.

🩵 Persistently feeling fatigued and exhausted which worsens after doing activities including physical activities, cognitive activities or even something emotionally exertive and no matter how much I rest I never feel refreshed from my fatigue.

💙 Sleep difficulties especially for me insomnia - to me I think that when I’m struggling with insomnia it’s because my body doesn’t have enough energy to sleep. I also wake up feeling unrefreshed and often exhausted even when I’ve managed to have a good night.

🩵 I struggle with my cognitive function - this is often referred to as ‘brain fog’ - it involves this like difficulty thinking, planning and concentrating as well as multitasking, difficulties with speech and poor memory.

💙 Flu-like symptoms, poor immune system and generally feeling unwell.

🩵 Autonomic problems - this is problems to do with my body’s autonomic functions. So things like poor body temperature control, poor circulation, dizziness. Orthostatic intolerance is something I really struggle with a lot; I struggle to tolerate being upright for too long and so have to sit especially with my legs out and also sit/lay reclined most of the day to ease my symptoms and prevent me from passing out in the worst case scenario.

Do you have more cognitive or physical energy?

I would say that I’ve always had more cognitive energy but I still have to keep in check what I’m doing and time activities so I don’t overdo it on my activity management and burn out. 

Do you/are you grieving for your old life - how do you cope with this?

For a long time I have grieved for my old life. I’m turning 30 next month and the plan I had for my life isn’t possible anymore which I still grieve for sometimes. I’ve also been academically driven I didn’t have any other life plans other than my education and the career path I’d planned out for my future, so when I became ill and had to leave University and then especially when I realised that returning to education wasn’t possible it was really hard. I really struggled to know where to place myself in the world and I felt stuck whilst the world and everyone else around me still where going places and it was hard especially when I saw people doing the things I wanted to be doing. I didn’t feel angry or envious as that’s not me, I just felt a sense of deep seated sadness and grief for the life I had lost and I felt like that for a long time.

What helped me cope was counselling and talking to a therapist; also friendships as well as just not focusing on the past or the future but just on the day in front of me and getting through that. I tried to celebrate the little wins because to me they were the big wins. I’ve also developed and grew my feelings of gratitude for all the things in my life big and small and that’s really helped me cope and realise what’s important in my life now and to look at what I have to be grateful for rather what isn’t there which is my pre-illness life.

What helps you get through difficult times? What are your go-to coping techniques?

Therapy has really helped me get through difficult things. Friendships are also really important to me especially the friendships I’ve made on Instagram and friends through pen palling - some of my friends also have M.E. and though we don’t focus on our M.E. it’s nice that there’s that understanding in the background.

My go-to coping techniques are:

💙 Anything sensory such as my aromatherapy diffuser or kinetic sand etc

🩵 My noise cancelling headphones along with an audiobook 

💙 Strawberry jelly and vanilla ice cream!

🩵 Letters to/from friends and pen pals

💙 Crafting especially colouring

🩵 Cuddling my heated Warmie zebra ‘Zoë’ (which I got as a gift from the charity ‘Smile for M.E.)

💙 Mindfulness or listening to soundscapes

Are you bed bound or able to move around a little and make it to the sofa and things?

I’m not bed bound but I spend most of my day on my bed as I can manage my M.E best being laid in best and I’m also most comfortable here.

I have a profiling bed and a hybrid airflow mattress so I can adjust my position easier and independently and it’s much better for managing my orthostatic intolerance. These were provided to me by my community Occupational Therapist and nurse.

I can move around like getting to the bathroom and through to my front room/kitchen area which is just a few steps away.

Since I’ve moved to my bungalow it’s been much much better for my mobility as there’s a way less walking required and no stairs to contend with so it’s made a massive difference for me. I really struggled to get around at my parents house and I was very restricted a lot of the time.

My ability to get around also depends on good/bad days. On my good days obviously my mobility is better but on my bad days I’m mostly restricted to my bed just so I can manage my symptoms and be safe and comfortable. I’ll only really move when there is someone here in case I fall as I can be very wobbly on my legs.

Do you get muscle wastage/do you have exercises to do to stop that or help circulation from sitting lots?

No thankfully I haven’t experienced muscle wastage so I don’t have exercises to prevent that from happening. I do some daily physiotherapy exercises to help keep me mobile as ‘if you don’t use it you lose it’ - the exercises are also to help with my other illnesses too. However I have to be careful not to exercise too much as with my M.E. I struggle with exercise intolerance and it can worsen my M.E. If I do too much physical activity of any kind and it causes payback and PEM even if I only do a tiny bit of physio so it’s a fine balance.

I once went through Graded Exercise Therapy (back when it was recommended as a treatment for M.E.) and it made my M.E. become much much worse. 

💙 In a 2019 NICE survey 67% of people with M.E. who did GET became physically worse afterwards.

In terms of circulation I have regular massages with a lady called Hollie who treats people with health conditions so her massages aren’t like spa treatments but more focus on my symptoms so in with my massages one of the things she works on helping my circulation.

Your decision and process of moving to your own home?

My decision to move house was based on two things. The first thing was the fact that I’m turning 30 this year (in a few weeks to be exact!) and I just felt it was time to get my own home despite all the challenges I have with my health. The other factor was that back at my Dad and stepmum’s the house just medically wasn’t suitable and didn’t meet my needs and I was struggling to live there and I couldn’t have the adaptations I needed because it wasn’t my home to give permission for certain adaptations etc. to be installed.

I was worried a lot about the idea of living alone because of my health but I just hoped I’d get the care and support I needed to enable me to live on my own. Thankfully I got the care hours I needed however I’m struggling to find additional PAs so I’m using a care agency at the moment.

The property I’m in now I was actually number 4 for so I didn’t think I had a chance and forgot about it and then a couple of months later I got a call asking if I wanted to view it. I was a little unsure at first because of the lack of storage space and the kitchen space but I’ve totally made it work for me and I’m now happily living here. Some days are really difficult I won’t lie and it’s not helped by the fact that I’m still yet to find additional PAs so my care situation isn’t ideal but at least for now I’m getting to use my care agency that I like as opposed to the not-so-great agencies adult social care use. It’s just a case of waiting and keeping my fingers crossed that a PA will come along asap as in the evening I’m meant to get 1 ½ hours but I can only financially get ½ and hour with my agency. (I pay a contribution towards my care but if I go over budget I have to pay the excess and my agency isn’t the cheapest.)

🩵 A myth is that a lot of people think that when you get your care through adult social care it’s free when actually you have a financial assessment to see how much you should pay towards your care.

Since moving here I’m slowly getting the adaptations I need to live independently. This ranges from the grab rail next the bath so I can sit myself forward on my own I’ve also got one by the back door, I’ve also had a key safe installed and I’m waiting for a step for the back door. I’m also waiting for my OT (Occupational Therapist) to bring me things like a perching stool and I’ve bought other adaptations myself.

I chose to get social housing as there was more security and the rent would be lower plus I’d be able to adapt the property. I couldn’t really imagine a private landlord wanting their tiles being drilled into to fit a grab rail. I’ve had support from a housing charity so I’ve had a housing support worker every step of the process. They set up my profile with the council to bid on properties. Medical evidence was submitted and I was instantly put in the highest band based on medical needs as my current property wasn’t suitable for me. Both me and my support worker was surprised I’d been instantly put in the highest band but it did make things easier as when I bid on properties I was more eligible for them. I was only able to bid on properties I was eligible for however after a while I made myself eligible to also bid on properties reserved for older people based on my medical needs so this did mean that there where more properties open to me that I was eligible to bid on.

Finding a new home wasn’t easy as most one bed properties where I live all had wet rooms. Because of my hypersensitivity with my M.E. showers make me feel like I’m in a super charged jet wash which is really physically painful plus I get cold easily in showers causing my muscles to go into spasm causing me more pain.

I had a total nightmare with the wet room situation (long story) but basically it felt like the assumption was that all elderly or disabled people needed or would need wet rooms so even when a property was advertised as having as a bath (perfect for me) whilst it was vacant a wet room would be installed or the advert would be out of date.

I hope that’s answered the question about the process of moving - I was a bit unsure how to answer that question such as how much detail to go into and give.

M.E. Guest post by Katie

I'm Katie, I’m 18 and living with Very Severe M.E. I live my life in one room, always in my bed. Not leaving it for months at a time. Everything, literally everything, happens from here. 

As you can partly imagine it affects all aspects of life. Although I’m not sure you can know just how much. 

I first got properly ill at 13 and from there have lost more and more of my life and being. My friends. My education. Hobbies. Sports. Joy and happiness. My identity. And the experiences you could expect a teenager to have. Parts of my family have drifted as they have been forced apart by lengthy hospital stays and the requirements of my care. Family who live further afield and can’t visit nor can we. And guests in the house are far too much for me to cope with. It isolates not just me but my whole family. 

There is not an inch of my life or how I live that M.E. has not affected. The more I lost the ability to go to school the more I lost my friends. But that was on them and their choices to start with. Teenagers argue and fall out anyway. And then when we’re ill we’ve pretty much all experienced accusations of faking. It’s a hard combination. I’ve wondered why I either wasn’t good enough, what my illness changed for them, or how they didn’t know me well enough to know I was always wanting to do everything I could. The same when it comes from relatives or beliefs it’s in our heads, exaggerated or made up. All those ridiculous things we are told. 


It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot. 

Aside from that even those I’m still friends with and would love to talk to or see I’m unable to due to my health. It has gradually trapped me and hidden me away more and more until it’s like I have ceased to exist in the outside world. Neighbours never see me leave the house, because I don’t other than in an ambulance, school people haven’t seen me there in years. My school years have passed now with no qualifications. I’m housebound but can’t even interact with my whole household. No family dinners, movie nights or outings. 

My identity was my passion for drama, education, and having fun with friends. My love of riding horses, hockey, the sunshine and outside. Enjoying shopping, dressing up and doing my hair and makeup. Spending time with family, young cousins and family friend’s children. Always being busy and having something to do. I miss it all hugely and have gone through so much grief as a result. 

But I have gradually gained a new identity, new friends, and new joy. My life is so unbelievably different but despite the horrific symptoms it’s not all awful, there are small pieces to find in the mess of it all. And perhaps my identity now is more meaningful. My identity is my writing and voice about this illness and experiencesr. It is the strength it has taken to get through these years and be here. It is the power when I stand up to health professionals and fight for what I need. The ability to advocate and metaphorically stand strong. But it is also my strength in my weakness. The tears I’ve shed and the support I’ve needed. Learning to be vulnerable and rely on others, be a team. 

And when I say everything happens from bed that includes some nice things. Crafting and starting my own little small business, yes, I need a carer to help but it’s something I never did before. And creating my platform and sharing my story. 

My friends are powerful sufferers of this illness who are better than the ones I’ve lost. I’ve known true support and care. I am in awe of them and their strength. Reminded every day why I write and why I share on social media. I’ve created stronger bonds with some family due to the level of care and interaction. M.E. and all it comes with has ingrained itself into my life in a way that will last long after this illness does. Some may take this to say my illness is my identity. Or the idea that we want to stay ill for some unknown secondary gains. It’s not. It’s just affected everything including my identity. Perhaps it’s not even the illness but just me. I’ve changed my identity as I’ve adapted to my situation. 

My life has drastically changed because of M.E. But I’m Katie, currently 18 and suffering, and I believe I will get to live again one day.

~

Katie raises awareness of M.E. and her lived experience of the illness on her Instagram account @katie_andm.e

Welcome to my new home!

 I have some exciting news to share, I finally have my own home!!

It’s a little one bed bungalow - secretly I much preferred bungalows over flats (- imagine having a deaf OAP neighbour who always had the TV or radio on full volume, it would have been a nightmare for my noise sensitivity!) AND this bungalow has a bath.

I was really struggling to find a one bedroom property with a bath and a times I was getting really low and fed up and disheartened as I kept being let down.

So basically because of my M.E. I really struggle with hypersensitivity so being in a shower feels like I’m being high powered jet washed - ouch! Plus I get cold in showers which triggers my muscle spasms - double ouch!! 

Locally there’s one big main housing association and they were the ones letting me down. I was bidding on properties that said it had a bath and as I was in the highest priority band for housing. I often won the bid on properties which supposedly had a bath but after I won the bid on the council housing system HCL I’d be told that the bid was skipped only for me to later find out that the information was out of date and the property actually now had a wet room. This happened about 11 times so you can see why I got so disheartened after each time this happened over and over again. Then there were the properties that whilst vacant the housing association installed wet rooms. Personally I feel there just seemed to be an assumption that disabled and elderly people needed wet rooms. When I asked them about the lack of properties with baths and wet rooms being installed the solution I was given: put an inflatable bath in the wet room!? Yep that was the serious solution that was given to me and my PA.

Me and my housing support worker was just in the process of trying to get me eligible for 2 bedroom properties when I got a call about this bungalow. 

When I bid on it I called the housing group that own the property (it’s different the the one I was writing about above) to put my case in for it but they said to just call the council and then when I became number 4 for the property I gave up on the idea of the property so I didn’t think it was to be but in fact it actually was! About 6/7 weeks after I bid in the property however I got a call and I was told that 3 people had turned it down and was I still interested in it and if so would I like to view it. 

There’s no storage space so nowhere to store my wheelchair but I’ve found a spot near the door to put it and my bedroom is quite big so I have enough room to make it work to store my medical supplies.

The kitchen area isn’t the best but again I’ll make what I have work and it’s just me living there and I’ll see how I go once I’m living there. One solution Dad gave was to get an external kitchen unit to extend the space and I’m going to put a shelf up too. The kitchen area is part of the living room and the living area is a good size plus I can have my craft area that I REALLY wanted to have so that’s a bonus.

Dad and Mandy have finished the painting now. The doors, skirting boards and window sills have had a freshen up. In the living room I’ve gone for a paint colour called ‘nutmeg white’ along with a pop of turquoise paint. Originally I’d expected to have a separate kitchen and living room so I’ve had to merge the two rooms together as I’d bought a couple of turquoise items for my kitchen so I’ve had to incorporate turquoise into my living space. It will be quite a colourful room once my IKEA button rug is down and my Poang chairs and footstool are in there along with my other furniture. In my bedroom I’ve got the same colour as I have here as I love the colour so much and one wall has glitter mixed into the paint for a subtle shimmer.

I’m not going to need to buy much new furniture thankfully as I own a fair bit already. I’ll need to buy my craft desk which I can’t wait to set up and organise all my craft belongings into it and I’ll need a desk mat, desk chair and floor mat (for the chair). In time I’m going to save up and buy a small desk to put in my bedroom and have my first ever makeup desk. I’ll also need storage and bits and bobs for the bathroom. Then other miscellaneous items like a laundry basket, clothes rack, bins etc and my white goods of course. I’ve bought already most of my kitchen bits and pieces. At first I’ll just have the essentials but in time as I save up and add things and I settle in it will become more my home and I’ll put my own style on the place.

I really want to make a success of living on my own. I know I’ll need some care but it’ll be nice to have to quiet time with the bungalow to myself. I do have my anxieties about living alone: managing my seizures and my bad M.E. days, getting the care I need, managing my health in general and it not going downhill, managing financially and not feeling too isolated to name a few things. I want this to be a new and positive chapter in my life as for so long I haven’t felt like I’ve had much to celebrate because of my health.

10 years on

This February marks ten years since I became chronically ill.

Sure I've had health problems all my life, I grew up with an acute curvature of my lower spine (hyper lordosis) and had care for that as well as treatment for my mental health as a teenager and also my now diagnosed Ehlers-Danlos, a genetic hereditary condition was always there just never known about. However non of my health problems as a child including my mental health including anorexia which I was seriously ill with never really affected me and my life to the extent and in the same was as my health issues that I've been dealing with over the past ten years.

Over the past ten years I have lost so so much. Friends, academia, a future career, my dream career, my independence, volunteering, the ability to look after myself, my mobility, my freedom, dreams and plans and much much much more. I have grieved and I am still grieving for the life I have lost and I feel lost, like where is my place in this world? Thankfully I'm now just beginning to get some support from a psychologist at UCLH to help me re-find my purpose and what is meaningful to me so I can move forward in life.

How it all started...

 It started back in 2013 with a case of the flu which I never recovered from. After then I was tired a lot, I struggled to walk and ride my bike around campus and to places like the shops and to dance for as long as I used to be able to. I found it hard to take in what was said in lectures and seminars and to get essays typed up and to do my set reading even with all the support of my academic support worker. Then one day I had a seizure, and then after that I had more.

By this point it was February and my health was in pieces. It came to the point where I had to leave University where I was studying nursing and return home. I thought at the time that this would just be a temporary measure and I even reapplied to a University to return to my studies. I've always been academically driven and my only plan for my life was academics and my career. My drive was to eventually become a child psychotherapist. I didn't get back into University but they advised me to do some further study which I did but it took me longer to complete the course than usual and I didn't get the grade I wanted and what my tutor thought I'd get so I felt pretty low. I could have retaken the exam module but by this point there was no way I'd cope doing it with the time frame.

I'd gone to my GP several times about my overwhelming levels of exhaustion and other symptoms. Each time my GP would diagnose me with Post-Viral Fatigue Syndrome and I just needed to rest and I'll soon be feeling much better. However I never did yet I still kept being told the same information.

Then on the 4th July 2017 I finally had my long awaited for neurology appointment with Professor Edwards regarding my FND (Functional Neurological Disorder). Until this appointment I'd not been diagnosed with anything other that this Post-Viral Fatigue Syndrome. Professor Edwards specialises in FND and confirmed that I did have FND - a neurological disorder where the brain's messaging system doesn't work properly. For some people this can cause just one symptom or for others like me it can cause multiple. So that was my first solid diagnosis since 2013, four years on,

As well as Professor Edwards confirming my FND diagnosis he also said I had M.E. but little more was said about M.E. so I was left to go home and Google this diagnosis myself and work it all out alone as no further referral was made. Professor Edwards also picked up on my hypermobility and referred me to Dr Kazkaz, a rheumatologist who specialised in Ehlers-Danlos Syndrome over at UCLH.

I eventually saw Dr Kazkaz and after some tests including genetic testing I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and because of the secondary problems my EDS was having on different organs of my body Dr Kazkaz referred me to different specialties within UCLH as well as the Pain Management Centre. I've also seen consultants and other departments at my local hospital too.

I honestly see my health as a full time job and that is a blog post I plan to write about soon.

Over the years my health has declined but not in a linear way, it's been a gradual up and down process.

Back in October 2019 - March 2020 I was in a specialist unit for people with FND and M.E. (though they mainly focussed on my M.E.) Some of the treatment health like learning activity management and developing a daily plan as well as being around the other girls with had M.E. and FND too but other aspects of my time there didn't help like Graded Exercise Therapy so soon after coming home my M.E. started to worsen.

Then in April last year I had surgery and that really crashed and set-back my M.E. and I haven't really recovered since then. However the surgery was a success.

Where I'm at now...

I still feel grief for the life I should have had and have lost but each day I try to find a focus for the day such as what I'm going to do and I just take each day at a time; each activity at a time as my health can change so rapidly. 

It's taken me a long time but I now feel like I've found 'my tribe'. My only way of socialising is on Instagram and through letter writing to friends and pen pals and I now feel since last year that I have a good network of people around me that are good and positive as sometimes the chronic illness community can be a competitive and unhelpful place.

I'm also now looking to find my own home and I can't wait to move out and have my own space to design and put my stamp on. I've already got a growing Pinterest board with a section for each room planning out my new home!

I have a good network of support from an array of different professionals from doctors, nurses, housing support workers, other professionals, Personal Assistants, family and friends.

So though the past ten years has been tough to say the least I don't regret becoming ill. It's made me a stronger and more resilient and grateful person and the person I am today.

Guest post by Rebecca writing about FND

“About 1 month ago I was diagnosed with FND, Functional Neurological Disorder. My initial reaction was relief and empowerment, finally, after 2 years of unexplained symptoms I was given a name for thief that had stolen my life away. However, I soon discovered that the letters ‘FND’ are accompanied by contradictions, at times prejudice and frequent misunderstandings. In short, the diagnosis felt somewhat like being thrown a fantastic gift, grasping it for just a brief moment before watching it slip through my fingers and smash on the floor. 

Certainly, the same emotional cycle of optimism, hesitation, disappointment and embarrassment followed. Optimism that a diagnosis would lead to answers, being heard and understood. Hesitation followed, caused by confused and contradictory explanations. I felt disappointment in the reaction of health professionals and lack of support provision and finally embarrassed by the assumptions, invasive questions and shocking stigma attached to the diagnosis. 

Both a blessing and a curse, FND was a common disorder that no one had heard of, an enigma of disability, real, but “not real”. I quickly discovered, my journey hereafter was going to be an unusual struggle, finding health, respect and rationality again. 

Thankfully, I also discovered I wasn’t completely alone! A few super strong and brave people were not only battling life with FND, but also battling the misinformation out there. Sharing knowledge and cultivating respect for people with FND. These voices, although few, provided clarity and confidence. Pulling others, like me, out of the ambiguity and creating a place of solidarity for them.

My hope, arriving in this strange new place, is that more people with FND will be empowered to voice their experiences, to shake off the offensive outdated language used around FND, and to deepen empathy within their communities based on knowledge and understanding. It’s time for FND and those suffering, to be understood, accepted without bias and listened to! Fighting Negative Discrimination!”

What is FND?

FND is a problem to do with the brain’s messaging system. It’s a bit like when you’re in a car an you go to press the break pedal but insteadc the indicators come on. This is what happens in our brain; it tries to do one thing but the messages get tangled up and misfire resulting in a wide range of different symptoms.

• For more information about what is FND and links to further resources visit my page on FND here