Kintsugi 金継ぎ - Acceptance of physical & mental brokenness

I've been listening to a mindfulness meditation series on Headspace about self-compassion. In each meditation the narrator gets you to repeat to yourself the following affirmations:

"May I accept who I am", "May I love myself as I am" and "May be at ease with who I am"

At first I found this hard to really take in. I don't love, accept or feel at ease with myself. Part of this was about my disabilities as it's taken me a long time to accept my chronic health problems into my life. My disabilities have made it hard to love myself as I am now and equally to be at ease with myself and my disabilities and all that comes along with having disabilities and chronic health problems.

It can be hard to love a broken body and mind; especially one that can't be fixed. So in the absence of being able to fix my brokenness I must learn to love myself as I am and accept my brokenness and also be at ease living inside a broken body and mind.

Kintsugi, 金継ぎ, is the Japanese art of putting broken pottery pieces back together with gold — built on the idea that in embracing flaws and imperfections, you can create an even stronger, more beautiful piece of art.

The Kintsugi bowl I made

Something I did a while back with my therapist was to make a Kintsugi bowl. It was a kit my therapist had bought for me, which was such a lovely3 thing for her to do for me and was so kind of her. 

The small bowl was whole. I then had to break the bowl, which I tried to do artfully, ensuring that the bowl was broken in a particular way. With my own physical and mental brokenness there was no artful way in which I have become broken.

Once I felt happy with my artfully broken bowl I set out to fix it, but to fix it in a way that would make the bowl more beautiful for having been broken. I mixed up a combination of glue and gold powder to make a golden glue to piece back together my now broken bowl. When I reflected with my therapist about how I glued to bowl back together my therapist pointed out to me about how I glued the bowl back together (therapists have to analyse everything (!) but it can be helpful at times and even I'm analysing in this post!). I didn't rush putting my broken bowl back together I carefully applied the glue, like how I care for my own broken pieces. I applied the amount of glue that I wanted. Remembering back to this therapy session I remember how I wanted enough glue so that it was visible and showed through the cracks of the differs ceramic shards. It was a carefully chosen process. With my own brokenness some of my cracks are invisible; my pain and exhaustion and struggles with mental illness cannot be seen but at the same time I also have scars on my body that are visible but I choose to hide.

The whole process of braking the bowl and then putting it back together made me think of my own body and mind's brokenness. I feel like throughout my whole life I've been broken in one way or another and smashed apart as I've gone through my life both by other people around me but also due to physical and mental illness.

In therapy over the years I've often stated how I feel that I'm broken into a million pieces and 'too broken to be fixed'. Unlike how I artfully broke the bowl I've never had any control over how my mind and body has broken and because of this it's been difficult to piece myself back together. Therapy I would say is the thing that's held my brokenness the most over the years. Sure inpatient and day patient treatment (both psychiatric units and medical admissions) has kept me safe and in all honesty alive, but even my times in hospital have added to my brokenness from so of the things I experienced as a patient. Then there is the medication I take both for my physical symptoms and also my two psychiatric medications. Medication just enables me to manage my physical and mental health symptoms to allow me to just get through the day. 

Therapy isn't for everyone but for me over the years therapy (most of the time) has been what has held me together the most to stop my broken pieces being blown away in the wind.

Going back to the kintsugi bowl I did with my therapist a few months ago massively helped me. It was such a simple thing that me and my therapist did together but it really helped me to accept my physical and mental brokenness but how in time I can piece my life back together. I will never be whole and unbroken again; I will always have to deal with being physically and mentally unwell. However out my brokenness and with time my broken pieces will come together and what I've learnt over that time in life and in therapy I can turn my brokenness into some better and create something positive. I can use my brokenness for example to help others, like I hope I do through my blog and what I share over on my YouTube channel and also through things like voluntary work and the support I give to my friends and others around me and hopefully in the future when/if I'm able to work. I can use my lived experience to my advantage and turn negatives into positives which I feel I already have done.

As well as helping others inwardly I can turn my brokenness into something beautiful. There is no cure for my physical and mental illnesses but as I was putting my kintsugi bowl together I realised that in my own self I can develop a better attitude and learn to accept my brokenness and learn to love myself including the broken parts and also to live and be a ease with my brokenness. By doing this I can start to feel whole, glued back together with gold.

I keep my kintsugi bowl next to my bed and put random bits on bobs in it but every time I see the bowl it reminds me that in time my body and mind can become like that bowl, broken but whole held together with something beautiful.

Book review: 'Me Before You' by Jojo Moyes *Spoiler alert*

Rating: ★ ★ ★ ☆ ☆ 

The plot of the story is basically Lou, a young woman in her 20's who is looking for a job after the café she worked at closed down. After many failed attempts at finding new employment Lou takes on a job caring for Will who became a quadriplegic after being hit by a motorcycle. Following his injury Will struggles to adapt to becoming a quadriplegic.

It's a romance novel, a genre I'd never read before. If I hadn't of heard Jojo Moyes sharing that it was a romance novel in an interview with her at the end of the audiobook I wouldn't have instantly put it down to be a romance novel. Saying that though there was an element of romance as Lou and Will over time grew feelings for each other as the story unfolded.

I think the author got it sort-of accurate on Lou's perspective as she get's used to caring for someone with a disability as someone new to this type of work. For example how at first Lou and Will struggle to connect with each other and Lou getting used to taking on a care work role such as managing Will's medications and the complexities of his health and how she feels unsure of what she is doing. Then on the flip side Will getting used to having Lou as his carer. I also feel that the author did her research on the affects of spinal cord injuries and also their care needs such as at one point in the book Will develops a fever and due to his injury he is unable to control his body temperature and required medical intervention.

I think the author got it accurate sort-of such as how at first getting used to having a new carer and also for Will how it feels for him needing someone to do so much for him and the loss felt when you become disabled which I could relate to. As well as this the emotional response people have towards their acquired disability. I think it was positive how Lou tried to show Will that there’s a life you can still live when you have a disability.

Despite Lou's best efforts to help Will see that he can have a life worth living despite his health problems Will remains deeply unhappy and wanted to end his life in Switzerland with the organisation Dignitas. I felt it was very brave of the author to bring into the story assisted dying and the mix of feelings and reactions from people Will, his family, Lou her sister and the quadriplegic message board. 

I liked how though most of the book was written from Lou's perspective that parts of the book were in the view of other characters such as Will's parents and Lou's sister however I would have like a chapter written from Will's perspective.

All-in-all it was a good book and I would like to see the film version and also read the book sequel at some point but I don't feel in a rush to want to read it.

Why the plastic straw ban is still a big deal

It's been a long time since the straw ban came into place but this issue still affects me so much.

Plastic straws are an essential aid for me; without them I'd struggle to drink and the vast majority of straw alternatives are not suitable: injury risk, allergies, not positionable, too expense, hygiene etc - see the chart below. I have floppy weak wrists so I can's tip a cup towards me; I also have to use lidded cups because of my involuntary movements. When I'm in hospital I hate being given the beaker cups with a spout lid.

Everyone I know who has a need for plastic straws always re-uses them; they are never 'single use'. When the ban came in I stocked up on straws so I have plenty to keep me going for quite a long time. I do have some silicon straws that can be spilt down and reconnected which (a) makes they great to clean but also (b) these are hypoallergenic silicone but the issue with these straws are that I can't position them to bend. I have to spend a lot of time laid down so I've perfected my ability to drink in this position and bendy plastic straws are the only option in this situation.

One thing I don't get is that if I say ordered a frappachino it comes in a plastic cup with a plastic lid, or if I buy a Diet Coke it's in a plastic bottle (which I still need a straw for) or if I order coffee and have a fruit pot the fruit pot comes in a plastic pot and I may also be given a plastic fork and if my drink is to-go it has a plastic lid. Yet whenever I ask for a straw it's paper or at the café at my hospital they provide hard biodegradable plastic straws that (a) melt in hot liquids, (b) if I jerk I jab the roof of my mouth and both the paper and plastic straw aren't bendable. I do try to carry around some straws but sometimes I forget to bring some with me or I don't plan to get a drink. Also where is the recycling points for my plastic bottle or fruit pot or paper cup and straw?!

So as you can see the straw ban though old now is still a big deal for me and probably many other disabled people.

Positives of 2021 and plans for 2022

It's so easy to dwell on the challenges of the past year. Thinking about how my M.E has worsened and whether this new state my M.E is in is now my new normal or how my FND has progressed with new symptoms developing and the difficulties I've had at times to access care like the migraine clinic that I've been waiting to see for about 2 years. Then there was the surgery I'm desperate to have an I could have had it but I need to have it in an NHS hospital as I need ITU/HDU on standby due to the complexity of my needs and no one can tell me when my surgery will happen. Then there's the dwelling on how the following year will be and the challenges I will undoubtably have to deal with ahead of me.

Dwelling on the challenges and negatives is so easy so what I've been doing with my therapist is thinking about the positives of this year no matter how small and also what I've achieved this year. This has really helped me to see this year much better; it doesn't take away the challenges but it's made me see things in a different and brighter way.

So, what's been positive in 2021?...

• 
  The first thing is how I've exceeded my goal of getting 100 subscribers to my YouTube channel. At the time of typing this it's not the end of the year yet and today checking on my channel I have 128 subscribers!
  
• I've also exceeded to number of books I planed to listen to/read on my Good Reads reading challenge.
• I've supported and participated in different opportunities. I've written articles for both the M.E Association and Action for M.E and also supported and been part of some of the campaigns they've run this year. I'm now an M.E Champion Blogger for the M.E Association. I also have become and ambassador for the Chronic Warrior Collective and joined their Extra Card Crew and supported their work.
• I feel so much gratitude towards my friends and pen pals for all the messages and mail I've received this year.
• This year I finally got a care package after years of trying and I now feel supported by our local adult social care service. I have a very good social worker, and a fab PA. Plus also in my care I have some good doctors and my link worker from the Social Prescribing team is great. Also just recently I've been assigned to a lovely advanced nurse practitioner from the 'Chronic and Complex' (which is how they alway see me when I'm in hospital) team who's supporting me with my care. I feel that in terms of my health and social care the past few months my care and support has really come together finally and getting this care I feel more positive about 2022.

Projects and things I want to do in 2022...

• I what to buy things from smaller or independent shops as much as possible more this year
• I want to commit to my photo journal 
• Also I want to stick with my 1 Second Every Day project and come up with some creative video clips (as my life isn't that interesting which I think is why I stopped last year)
• I want to finish my BSL online course
• I would love to learn how to braid my hair
• I want to continue growing my blog and YouTube channel
• And finally hopefully I'll have my surgery soon and some extra PA's too!

FOMO - Feeling of Missing Out

I don't use the term 'Fear Of Missing Out' because there're isn't any fear that I may miss out; I know that I'm missing out hence the feeling of missing out.

Having chronic health problems, especially having severe M.E I often feel like I'm missing out. This could be missing out from not having being able to graduate from University, or feeling like I'm missing out on what I see people I know are up to from what they share on Instagram or missing out on family occasions or that I missing out on the life that I should be living if I hadn't have become unwell. I feel like I'm missing out on so many things: education, employment, socialising with friends, family get togethers, holidays, going places and so much more.

I've never gotten over the Feeling Of Missing Out and it makes me feeling like my ill health is winning over on me and that it's taken so much away from me. Rather than feeling angry like some people may feel for me I feel more a sense of deep seated sadness for the life I should be living if I hadn't of gotten ill.

During the Christmas holidays especially for myself and many others it feels a time of feeling like we've missed out. There ar times when I've had to miss out on events; some of which I would have loved to be part of but I know it wouldn't have been possible for me to join and it would have tipped my fine balancing of energy levels and other symptoms. I had to prioritise so carefully what I could and couldn't do and how much I could do. 

That feeling of missing out makes me feel at times invisible as I'm not there, instead I'm alone in my room. Coincidentally the international campaign on World M.E Awareness Day is called the 'Millions Missing' - the millions of people world wide missing from employment, education, society etc due to their M.E, especially those with severe and very severe M.E.

I don't think I'll ever get over the 'Feeling Of Missing Out'. I always wish I could enjoy things and equally not feel the payback and exacerbation of symptoms when I do join in with something. However I feel like I've come to accept those feelings of missing out and times and events that I do want to join in with, even briefly, I've found ways to do so. I plan lots of rest beforehand, I ensure that I manage my energy whilst joining in and listen to my body when it starts to tell me that it's had enough or needs a break and I ensure that there plenty of time to recover after.

I've also come in a way to accept my limitations and that feeling of missing out. I know that I can't do everything so instead of dwelling on what I can't do and what I'm missing out on I look at what I can do. This has taken me some time to do and there are times still when I do feel sad about certain things I'm missing out on. Life with chronic illnesses isn't a linear; there are times when I feel okay and times when I don't feel okay including that feeling of missing out. Sometimes seeing a post on Instagram or something on YouTube or hearing what a friend has been up though I'm happy for my friends inside I wish I had the ability to do things and then that makes me feel like I'm missing out on things I'd love to be able to do. But this is where acceptance comes in and also focussing and feeling gratitude for what I am able to do within my restrictions and the feeling of what I can do rather than the feeling of what I can't do and what I'm missing out of.

Christmas with a chronic illness plus some tips

Christmas is a lovely time of year. I love spending more time with my Dad who is off work as he's a teacher and I enjoy seeing my family. I love the kindness of my friends sending me cards and gifts and I enjoy making cards and gifts and sending them out in return.

However, this time of year can be difficult. I can't speak for all chronic illnesses only mine and how they affect me. I find Christmas affects different aspects of my illnesses. My limited energy means everything takes a lot longer to do and as I type this I still have a load of wrapping to do. Making, writing and sending out Christmas cards and gifts took me at least 6 weeks to do - I don't normally do Christmas cards but it was something I wanted to make an effort doing this year. I also have to plan a lot of things, things I want/need to do and how I will do them such as breaking up the task, ensuring I follow my daily plan and have regular rest periods, have restful days before Christmas Day to enjoy the day and then plan Christmas Day itself and then ensure I can rest and recover after Christmas Day so that I'm able to visit family which I really want to do as I haven't seen my cousins in quite a long time. 

There are also events that I have to decide to sit out of as it will be too much for me. I find my hypersensitivity is affected so having family round downstairs (which I'm sitting out of and laying in bed resting instead) and the noise from downstairs is too much so I put in my noise cancelling ear plugs and also my noise cancelling headphones. As well flashing fairy lights affect my hypersensitivity to light. I also find the cold makes my pain and muscle spasms worse.

Despite all this I set myself to focus on the enjoyment of Christmas and when you have a chronic illness or disability you do just learn to live with and adapt. Christmas just poses extra challenges compared to rest of the year.

Some of my tips for managing the holidays with a chronic illness or disability

(As I said above, I can't speak for all chronic illnesses but hopefully you may be able to relate to some of what I've written and also some of what I'm going to write about below.)

• Ensure you have enough medication to keep you going!
• Plan, plan, plan! List all you want to do, from doing some baking through to Christmas Day events
• Use your activity management skills; don't do more than you're able to and listen to your body. If it's telling you that it's tired, in pain or flaring up etc stop and take a break and rest.
• Pace yourself. Break tasks down such as Christmas card writing or wrapping gifts.
• Though you can feel like your missing out your body isn't Superman and you may need to sit out of some things so you are able to enjoy the things you do take part in.

Low Level Activities

When you have a limited supply of energy it can be difficult at times because you want something to do to occupy yourself but you may lack physical or cognitive energy to do certain activities. I find myself in tis situation a lot as well as building low level activities into my daily plan so I'm doing more restful low level activities alongside actives that take up more of my energy.

So here are some low level activities I find help to fill my day.

Audiobooks

I find reading a little more challenging as it requires more concentration so audiobooks have opened up a whole new world to me and made me fall in love with books again. There is a lot of audiobooks out there in a wide range of genres and I find it really enjoyable to lay in bed listening to a book.

If you struggle to access books because of you're disability you may be consider to have a 'print disability' alongside those who are blind and visually impaired. This may give you access to the RNIB Library and Calibre audiobook library though an app called Easy Reader. This is how I get my audiobooks and it's great that I can access audiobooks for free. Alternatively there are lots of different audiobook subscription services out there now with more people wanting to access audiobooks. 

Reading

If books are accessible to you this is another low level activity and depending on your ability you could just put 10 minutes aside to read. I find trying to get a variety of different activities in my day helps me as my mind and body aren't overdoing in on one type of activity. But if you love books you can spend as much time as you wish reading.

Some areas may offer a home library service and volunteers can find the sort of books you like and bring them to your home for you if you are not able to visit the library yourself and this can help bring down the cost of buying books as well as finding room for your books.

Podcasts

Podcasts I quite enjoy listening to as I find them so informative and I like the wide variety of podcasts that are out there. There is such a wide variety of podcasts out there on a wide verity of genres, for documentaries, educational, mini fiction series, current affairs and chatty style podcasts and everything in between! There really is a podcast for everyone.

I get my podcasts from BBC Sounds and Apple Podcasts and currently I'm subscribed to Audible so there's podcasts on there too.

Colouring

Colouring is a good low key energy as you can break the activity down and just spend small amounts of time and finish the image bit-by-it. There's also such a wide range of colouring books out there; some with more complex images than others. You can also get colour-in stickers or postcards.

Activity books

There's a wide range of activity books out there from word search books, criss cross, sudoko to more creative activity books like sticker-by-numbers. Like colouring you can break the activity down and just do one word search puzzle or part of a sticker-by-numbers image. 

Jigsaw puzzles

If you're able to jigsaw puzzles are a great low level activity and like with some of the other activities mentioned above you can slowly work on jigsaw puzzles until it is completed. You can also get a range of difficulties from 100 piece jigsaw puzzle to ones with 1,000 pieces.

I'd recommend to start small and to work your way up. If you find you enjoy jigsaw puzzles it might be worth getting a puzzle board so you can store the jigsaw puzzle you're in the middle of working on.

Pinterest

I would personally consider Pinterest a low level activity. You can build boards on different topics based on your interests. One activity I'd defiantly recommend doing on Pinterest is building your dream home with no limitations or restrictions. As a suggestion you can create your 'Dream Home' board and have a section for each room of your dream home and you can spend ages designing all the things you'd love to have.

Book review: 'The Secret Midwife'

Rating: ★★★★☆

I thoroughly loved this book and it was something different to my usual genre of book and I'm intrigued to listen to more memoir/confessional books.

The book is written by a midwife who remained anonymous and she shared in her book in a chronological fashion. At 17 she didn't know where to take her life and then went on a midwifery taster course and loved it and she knew then that that was her vocation. At 17 she started her 3 year midwifery diploma. She took the reader through her training as a midwife until she qualified and proudly put on her blue dress for her first shift as a qualified midwife. 

The book followed the highs and lows of her career and she went into such detail including the medical aspects and I learnt so much about the role midwives play and all the complications that can happen. As well as that she also shared her person life; how she broke off a long term relationship and then found her husband and their relationship and life together, her miscarriage of her first baby and then the birth of her daughter. 

In the book she also shared the changes of her role as an NHS worker as the years passed by. The way management changed, new protocols and changes to NICE guidelines and work practices. As well as this she also spoke of how it was like to work for the NHS and the strain on resources, lack of support in certain areas such as giving evidence in court and chronic staff shortages. In the book the author shared how this ultimately lead her to having a mental breakdown and having time off work due to anxiety and depression.

Each book touched on different topics and themes of the job such as her midwifery training, baby loss, mental health in motherhood, babies born in corridors and in toilets, Dad's delivering their baby as there was no time to get to the hospital, birthing complications, surrogate women, different cultures and how this affects the delivery of a baby among many other things.

It was a totally different book to the ones I've been listening to for quite a while now and I throughly loved this book and I've already sought out similar books. I learnt a lot about the role a midwife, what they do and so much more. That whole side of healthcare I'd never given much thought to and I now admire the complex role midwives play within the NHS. 

As I listened to the book I followed the highs and lows of the different men and women the author featured in the book. There where funny moments and more somber elements. It's a book I would defiantly recommend. 

5 Money saving tips

I'll be the first to admit that I used to be rubbish with money like many people but now I feel like I'm fairly savvy when it comes to money and here are some of the things that I find helps me to save money as well as spend more wisely.

1. Use an app for monitoring your money

I personally use an app called Pocket Expense for keeping an eye on my money and I've found it really helpful. Before I used a spreadsheet that I created myself and there I'd put what I'd spend where or what income I had coming in such as my PIP disability allowance or a refund. This app now does the same thing but it's a lot easier and I like to colour code everything so have thins on the app and the icons for different spending categories such as a purple telephone icon for my monthly mobile expense. I'm sure however that there are many other similar apps out there for you to use too.

Other recommended apps can be found here.

2. Set a no-spend goal

To help me save money I put myself on a no spending goal on purchasing craft things and stationary (except the obvious essentials like glue). I did this as I already had plenty of craft supplies and stationary and I didn't need more so I set myself a goal to use up what I already had to try and save money. I've been on this ban for a while an I still have a lot of craft and stationary supplies (so I think I'll be on this no spend goal for a while). Plus also doing this has helped me to feel good about how much money I have been saving and showing myself my resilience to not buy anything new and using up what I have.

Maybe you could do something like cutting down on buying something like take-out coffee, sweet treats, alcohol, eating out or take aways? Think where you spend your money and how you may cut back such as making coffee at home and putting it in a thermal mug to take out or making your lunch at home rather than buying it etc?

Apps like the one I talked about above can help you work out where your money goes so you can see places where you can implement a no-spending goal.

3. Stick to a budget

Sticking to a budget can also help you save money. It might be something like how much you spend on your weekly food shop, when you go shopping for clothes or at theis time of year how much you spend on Christmas gifts.

With the latter I made a list of all the people I'm sending gifts to and then I set a budget on how much I was going spend on each person. I also put some money aside earlier in the year to hep me with my Christmas budget.

When you stick to a budget is can help bring a sense of achievement as the money you've saved you can put aside for something else to to put into your savings.

4. Be savvy with shop membership offer and deals

Joining up with shop membership scheme or advantage cards or other similar scheme can bring a lot of benefits. You can get discounts or you can earn points as you shop which may hold monetary value or you may get special member discounts or offers.

With my memberships I'm always looking at what offers they have for me and some places target you with certain deals based on your past shopping history. 

I think my biggest success has been with a particular store which I shop from a lot for toiletries and makeup and gifts. For each pound (£ GBP) I spend I get 4 points (4p) but if I look out for deals I might get triple points or an extra 200 points if I spend a certain amount or 150 extra points on selected brands or 3 for 2 deals etc.  With this store I save up what I need to buy and look out for their offers and then I do a big shop so I claim the additional 200 or 500 points or free products or on a couple of occasions a free mystery box worth £30.

The points I saved with this membership has really helped me with my Christmas budget as the money I had on my account I was able to use on Christmas gifts (and to treat myself too).

5. Open a savings account

Savings accounts accounts with banks can help you save money. You might want to do something like transfer a little money aside each month from your current account each month to help it grow or just save up and transfer a little aside when you have a little spare amount.

You can search around online for which banks have the highest interest rate on saving accounts or offers for opening a new account. A couple of good comparison websites are Money Saving Expert and Money Supermarket.

An alternative to a bank savings accounts are stocks and shares savings accounts. The interest rate on these accounts are much higher than what banks can offer and though they depend on the stocks and shares market it is something that I would say is something to defiantly look into if it is something you are able to commit to [more than a bank's savings account]. On company I can personally recommend is Foresters.

Mental health & disability

Recently I decided that I needed to address mental health more here on my blog. It's something I've shied away from possibly because I've had experiences where my illnesses where not fully understood and where mistaken for being psychosomatic or that I'd over reacted turning a twinged hip into one that has dislocated. (Note: having hypermobile Ehlers-Danlos my joints do dislocate a heck of a lot ore easily, so no I don't have to be in a car crash for my hip to dislocate). In all honesty when healthcare professionals think I'm 'making it all up' it's really upsetting and I don't feel like my very real and very physical illnesses are believed and are poorly understood and at time it's makes me question myself. Having rare illnesses or poorly understood diagnosis's is often really hard. I know the medicalisation of my life and my life with the conditions I have often better than most doctors, especially when you live in a small town. Sometimes talking in medical terms makes professionals think that I've been on WebMD instead of living with chronic health problems and because my illnesses are poorly understood I've often not been given the care I  need; this is especially the case in A&E.

What staff can do is listen to me and let me use my expertise by experience and learn that a 28 year old may need help with certain tasks most people my age can do for themselves. Also just ask me what would help me the most like turning the lights off in the room and keeping the noise level to a minimum and ensure I am comfortable and have the tools to communicate to name a few things. Also along with that with the new NICE guidelines I hope that staff will follow the new guidance for the care patients with severe M.E may require as I find out of all my illnesses the hospital environment flares my M.E up the most.

Now, back to mental health. My struggle with my mental health precedes becoming chronically ill and now my depression and anxiety are exacerbated by my chronic health problems and disabilities. 

Being chronically ill/disabled is pretty much a full-time job. All the time without a break you are dealing with symptoms, bad days, medication times, appointments, chasing up professionals, sending letters and emails, making phone calls, ordering medication and other medical supplies, endless waiting for so many things - the list goes on. There is so much more to having chronic health problems and disabilities than meets the eye.

For many people as well as their physical health it deeply takes a toll on their mental health unsurprisingly. 

Everyone has mental health and it's important that we look after our mental wellbeing as much as we do for our physical wellbeing.

Since becoming ill I've found a gap when it comes to mental wellbeing. When I developed depression and anorexia as a teenager I was able to access psychotherapy and other care. However when I became chronically ill there was and is little emotional support to help me deal with being chronically ill and little of it has come from the NHS and never from mental health services.

I became ill in 2013 and was officially diagnosed in 2017 with FND and M.E - my other diagnosis': hypermobile Ehlers-Danlos Syndrome, PoTS and a few others all collectively being my 'main' conditions followed shortly after when I was referred onto other consultants. Even after then after being given  name to my illnesses there wasn't a massive shift in the help I was receiving physically let alone for my mental wellbeing. It wasn't until 2019 when I when into a specialist ward for my FND and the severity of my M.E that I received some sessions wth a health psychologist. In these precious sessions it was the first time I was able to talk about and work on how my health was affecting me.

There is health psychology services, there's even one at our local hospital. The specialist ward I was on tried to refer me as part of my after-care following discharge but the service only accepted those with certain diagnosis' and non of mine where on their list. Plan B was for a psychologist from our local mental health services to see me with support from the hospital's head health psychologist, who from what I was told was interested in 'my case' (gosh I hate that term, I just feel like my oversized hospital file as opposed to a real person with whatever is in said oversized file). That Plan B never came to fruition. It felt like my mental wellbeing wasn't important to them. I also felt that the support was denied from both health psychology and mental health services because I didn't fit into a nice neat tick box - I didn't have the right physical ailment and neither did I have a sufficient enough mental health diagnosis (despite my diagnosis of clinical depression).

However, positively, upon discharge in my after-care plan I was also referred to a Social Prescribing service and they where able to refer me to a counselling service which they had a pot of money for. Reflecting on this this has been the better option. 

Counselling isn't for everyone but for me medication alone doesn't work alone. Now I've been seeing a therapist (and there's no shame or weakness in seeing a therapist or indeed taking medication for your mental health) it's really helped. It's helpful to have someone from the outside who's just there to listen, support me and help me see things in a different way (and how it's all confidential too). I can talk about how down I get when I'm stuck in one room, or how out of control I feel or how I get 'sick and tired of being sick and tired' or how I wish I could quite my disabled full-time job and also the ability to grief for a life that's been turned upside down.

I think there's a lot of awareness around how our mental wellbeing can be affected by lots of things - job loss, family breakdowns, bereavement, being a victim (or more-so a survivor) of crime etc. However I don't think that many people attribute chronic illness and disability to poor mental wellbeing and I think more needs to be done about this. For example more health psychology services and them accepting a wider range of illness to be directed to their service. I also think that GP's, consultants, nurse specialists etc need to become more aware of how someone with a chronic illness or disability may as a result of their health may be struggling with their mental wellbeing. I know within the new NICE guidelines for M.E that CBT - Cognitive Behavioural Therapy - is now recommended as a support tool but the problem with that is that for some, like myself, CBT isn't the right sort of therapy for everyone and other types of therapy may be more effective.

I'm so grateful to have access to therapy as I know for some it isn't something they are able to access. I think mental health and wellbeing within chronic illness and disability also needs to be talked about more and considered.

Lastly I just want to say to those who are chronically ill or disabled that it's okay to not feel okay; we're allowed to be upset, depressed, bereaved, angry, frustrated, fed up and every other emotion named and un-named. Also don't feel afraid to talk about how you are feeling emotionally - your mental wellbeing is just as important as your physical wellbeing; speak with your GP or your consultant or your social worker as they may be able to help. Also talk to family or friends or even a helpline. As good as it is to talk to my therapist I find it good to talk to my friends who also have chronic health problems as they 'get it'. 

Also importantly and I can speak from personal experience on this point is to live outside the bubble of your health problems. My friend once shared this quote "your life is like a piece of cake and you have ten portions, but only one portion is your health". It is so important for your mental wellbeing to yes deal with your health problems but to not have them as the central sole of your life and existence. When I realised this and started to focus on all ten portions of who I am it massively has helped my mental wellbeing.

My new normal? Plus new M.E NICE guidelines

With my health conditions especially my M.E and FND I go through dips, sometimes lasting a few days, a few weeks or even a few months before slowly returning back to my old 'normal'. Often however when I'm having a long dip I begin to wonder if this is my new normal. Basically when you have a chronic illness you have you baseline 'normal' - what level of being ill is normal for you and then within that you generally have your good and bad days centred around your baseline and then you go through dips. For some people they can experience a period where they improve but unfortunately I've never experienced this.

Recently I've not been too great especially with my M.E and I've been struggling more. My M.E is classed as severe and has been so for several years now. At first I was just not feeling my best and then I developed a chest infection. As for my my M.E is experienced more as a neuro-immune illness I am more prone to infections and it takes me a while to recover from them. So I just put the exacerbation in my low energy levels and feeling generally unwell and other symptoms down to my body firstly feeling rubbish from both the infection and the antibiotics and then finding it hard to get over my infection. But as time goes on you start to wonder if this worsening of my M.E is my new normal. Alongside that now having a profiling hospital bed at home feels another step into my illness and though having this bed is much better for me and is helping me it's like another confirmation of the severity of my ill health.

For me I've started to wonder this and you begin yet another cycle of grief for yet more loss of your health. I'm grateful that at present I'm having counselling and can talk to my therapist as well as having some really good friends that I can turn to.

Revised M.E/CFS NICE guidelines

I don't want to say too much as I haven't yet been able to fully read the new NICE guidelines. NICE guidelines in the UK are basically instructs professionals on how best to deal with and treat [most] illnesses.

For a long time the NICE guidelines for M.E/CFS (Chronic Fatigue Syndrome) have been pretty poor, lacking, not fit for purpose and for many people with M.E/CFS harmful. The old guidelines as treatments for M.E/CFS have stated that two main treatments to be given are CBT - Cognitive Behavioural Therapy and GET - Graded Exercise Therapy. 

In regards to CBT it mainly made out that the basis of M.E/CFS was psychological as opposed to being a neurological/neuro-immune illness. Then when GET was prescribed to patients for many it did more harm than good. The PACE trial was an absolute disaster and very misleading on how CBT and GET was truly affecting patient and when the true figures for how CBT and GET affected patients it proved just how harmful CBT and especially GET was for people with M.E/CFS. Yes for some people CBT and/or GET did prove helpful but for the vast majority of patients the way M.E/CFS was seen and treated needed to be changed.

I now this from personal experience. There are many different forms of psychological therapy and for me psychologically CBT isn't the right type of therapy for me. Then when I was prescribed GET it was just impossible and made my M.E worse and my body just shut down even more.

In a poll by the M.E Association when people where asked if the agreed of disagreed with the erasion of GET from the new NICE guidelines 100% of people who filled in the poll agreed with GET being removed - link here to the poll results.

 

The new guidelines

The new NICE guideline for M.E/CFS took three years in the making and the launch was put off as more consultation and investigation was felt needed but now (yay!) they have been published.

GET has been totally erased as a treatment and CBT is now seen as a support tool to help patients cope with the emotional effects of their illnesses rather than it being a treatment to 'improve' M.E/CFS. The new guidelines also have a dedication section for patients with severe and very severe M.E/CFS (which I have read) and some of the recommendations on how to support those patients I felt was very positive and I hope they will go on to help my own care and support needs. For example the new NICE guidelines state that home or virtual visits are recommended and I know from the years of having severe M.E how challenging it has been at times to get care at home. Other little suggestions I liked sure as ensuring that a private room is offered to patients and that the environment is kept quiet and lights are dimmed and personal care is best being given by those that know the patient well who are familiar with the individual's needs.

A link to the new NICE guideline for M.E/CFS can be found here: https://www.nice.org.uk/guidance/NG206

It's okay to use a mobility aid

Recently I've come to realise that some young people/young adults with chronic illnesses and disabilities feel afraid in using mobility aids. I watch a fair bit of YouTube and one content creator made a mini series looking for either a mobility scooter or electric wheelchair and in the videos she was afraid of the aesthetic and clinical look of these mobility aids. Then another YouTube content creator has shared her story about her anxieties initially around starting to use a walking stick and then a wheelchair and then in the comments of her videos others shared their anxieties around using mobility aids also.

I think there's a long standing stigma around disability for young chronically ill and disabled people as aids especially I've found are often associated with the elderly. All around us in society and on the media we see older people using walking sticks for example. I've also found that when going through catalogs and looking on websites that sell aids nearly all the time the models used are older people. It even makes me second guess if I need a particular product when their targeting the user of such as thing at someone much much older than myself. This creates a lot stigma around mobilities aids and other aid products that these products are just there to be used by the elderly.

When you have an acquired chronic illnesses your life slowly turns upside down and what it once was pre-illness is no longer there and it's a huge adjustment; I know this from my own personal experience.

For some people their illness can affect their mobility; they may struggle with the functioning of their legs or walking may exacerbate symptoms such as pain and fatigue. This is where mobility aids - walking sticks, crutches, collators, wheelchairs etc can be a massive help and in the name mobility aid. But there's a lot of stigma around mobility aids and some young people feel put off from using mobility for fear of being questioned or judged for example (this has come from what I have seen and read on YouTube in videos and in the comments section).

My floral crutches

I've been using mobility aids for years now. Initially I had a fold-up walk-in stick for when needed to then using my walking stick all the time. I then progressed to using crutches and now I use a combination of either my crutches or my wheelchair. I hated my grey NHS crutches - they where so clinical, uncomfortable and they just didn't feel right and I didn't feel like myself and I felt like they made my disability more obvious and people often assumed or asked me things like had I broken my legs or what was wrong with my legs. 

When I got my purple spotty crutches I felt more me and they where more of a permanent fixture in my life and to my mobility rather than a 6 week use of NHS crutches for a broken legs or ankle sprain. (My walking stick before these crutches where a floral print.) I feel that having a mobility aids with a design on them helps me in a way as they express who I am and my style as opposed to glaringly obvious NHS grey crutches identifying my use of them. Especially as my use of crutches is that is permanent - anyway that's just how I feel about my crutches (and the accessories I use on my wheelchair).

Another point I feel that needs putting in this post is the portrayal of disability in the media. Occasionally you see the odd main character in a wheelchair but to my knowledge no one young in the 20's and 30's age range. When it comes to crutches and walking sticks you see even less and the only main character that I can think of is Hugh Laurie who plays Gregory House in House M.D. (there's maybe more out there).