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.