NICPM Update // 27th December

Today I've just got back to the ward after spending a couple of days at home for Christmas. I had my lunch and then had a nap. It's the evening no and I'm really looking forward to bedtime!

Christmas Eve I just tried to settle back in at home with my daily plan. In the evening my Uncle and his girlfriend came round and we played and game.
Christmas Day I got up and had breakfast then we opened gifts and then I got ready to go to mum and Fred's house. We did gift opening and then had dinner and dad picked me up so I could go home and rest. I had a nap for a little while. In the evening one of my other Uncle's drove down to see us.
Boxing Day I just rested and tried to get back into my routine. I spent my activity time making cards for letter writing to pen pals and utterly wore myself out. In the evening my stepmum's family came round. I only stayed to eat; I found the noise and business really started to flare up my symptoms so I retreated back upstairs to my room with my noise reduction ear plugs and noise cancelling headphones. I also made sure I had everything packed.

There where some challenges and there where points where I go upset as I just got so tired and worn out or overwhelmed but I tried to focus on the positives of my time at home like spending time with family, spending time with Flop and playing lots of games.

There's a quote my friend says: "Just keep swimming and if you can't swim, just float."

Having my daily plan that I have on the ward helped give me direction as to when to rest, wash, do and activity etc. Unfortunately I wasn't allowed a lay-in except my 15 minutes from to get myself awake ready to go and get breakfast. There was also physical challenges such as the stairs at home - I defiantly did my daily physio! I also struggled not having alarms or people reminding or ding my medication for me.

Back on the ward things are slowly progressing which is positive. When you're in the midst of something you get so wrapped up in the moment that you forget to look at how far you've come and that comes with mixed feelings. Happiness on the forward steps you've made but also fear as you're stepping into this unknown zone. (One big fear from me is losing the care package I literally just got before I came here which I fought 6 years for).

One positive is that we're going to ask my local CCG for extra funding to extend my stay here for 6-8 weeks to continue with my rehab.

I'm trying to just focus on on day; one hour at a time. Now I am writing a blog post; next I will get my 7pm snack, now I am having my snack; next I will rest and so on until I go to sleep.

Even though I am progressing it's all still very difficult physically and emotionally. I'm still experiencing constant and persistent symptoms all the time, even when resting, these can rate from just one storms to experiencing numerous symptoms all at once. This obviously makes sleep and rest difficult as I find it hard to settle down and recharge because I'm almost in a battle with myself, my body and my mind. I keep being told things will get easier soon but it's been 10/11 weeks and there's still no relief from my symptoms. I'm just thankful for my medication as I'm sure my symptoms will be a lot wore without them.

I'm now in my pj's (I own far too many thanks to my mum who's bought me a lot of pairs recently) including the ones I've got on now which I got for Christmas and I just want to settle down for the evening. I've asked if my night meds can be given as soon as possible so I can get off to sleep hopefully by 9.30pm.
My sleep time is 10pm and I wake up at 8.45pm so I do get a lot of hours in of "sleep" but (a) often my sleep is pretty broken, I can struggle to get of, often because I'm overtired and (b) I've found with the amount of activity I do in a day and the reduction in day time sleeping that I need more sleep at night.

I think that's all for now. I will keep you updated about funding. I'm looking forward to a quiet-ish weekend and then the following weekend I'm going to see a special gala production by the Northern Ballet Company's for their 50th Anniversary.

Coping at Christmas when you have a Chronic Illness/Disability, Autism or Mental Illness

Whilst Christmas is for most people a joyous time for many people it can be a daunting time for some, especially to those that have a chronic illness, disability metal illness or autism. I'm only writing this post from my own experience and I know that each person's experience and ways of coping my differ from mine, but this is was I have to say on the subject.

In ways I do enjoy Christmas; it's a time to see family as growing up with my family living in various parts of the UK Christmas it the one guaranteed time to see and spend time with my family. I also love playing games and again that's a predictable certainty that we will be doing that.

Christmas is just as equally hard in so many ways; some of which you may be able to relate to...

The first one is grief, growing up Christmas Day evening we would always go to my Nana and Grandad's house with the rest of my family; then we lost my Nana and a few years ago my Grandad, and even though time has passed it still feels odd not to have that tradition.

I find the change in my usual routine and the house looking different difficult to cope with. I also struggle with sensory stimulation - flashing Christmas lights on someone's house, so much more to be looked at (such as the Christmas decorations around the house), Christmas music being played everywhere. It's often all just too much for me to cope with and process.

Christmas is meant to be a happy time, but when you're struggling with a mental illness such as for me depression and C-PTSD it can hard to feel happy. When you're around people you have you put on a mask and at Christmas you have to wear this mask a lot lot more and it can wares me down.

Even though I have come a million miles from where I was as a teenager with my anorexia I find the focus on food at Christmas time and then the subsequent New Year dieting craze still a challenge.

Carrying on with the mental illness and wearing a mask there's no days off when you have a chronic illness/disability and with that too you have to put on a mask. I feel the need to have to hide how much pain or fatigue or whatever other symptoms you're experiencing around people and go to that event and this tradition and almost battle with your body to get through as much as you can bare and you're waiting out for when you can retreat to the quiet comfort of your bedroom.

Continuing from that when you have a chronic illness/disability there's also a lot of delegation as to where and when to spend your limited precious energy. There can also be a lot of cancelled plans or downturned invites and feeling of missing out and also not feeling like you average 20-something year old.

There are positives to this though. It's not all doom and gloom. Explaining to loved ones you health problems can help such as dishing you up a smaller portion for Christmas dinner so you don't have a dreaded gastro flare up. Delegation can be difficult but choosing what events you will go to and also how long for will mean that you can have a nice enjoyable time with reduced levels of payback.

Listening to your body is important. You may need to say for example need extra sleep at night and if you do somewhere and you're body is saying it's had enough be kind to your body and go home or to the quiet retreat of your bedroom.

It's all very individual to you but make the most of the good moments, even if it's just for a couple of hours and be around of yourself for managing that.

You might find it helpful to have a mini coping kit. Like this Christmas I know I will find my noise reduction ear plugs and noise cancelling headphones helpful to get some quiet in my bedroom if I'm sitting out of an even downstairs or if someone is paying music and I want a nap. I'm currently in neuro rehab but will be going home for Christmas so I'll have my daily routine to follow as close to as possible (though unfortunately no lay-ins will be allowed!)

Always look for the positives and rather than feeling like your health is preventing you, see your body as something that needs nurturing and kindness and remember that if you can't do something this year it's not a once in a life time opportunity as Christmas comes around every year.

NICPM: Little Victories

Today I managed something huge, I could say the negatives like how anxious I way and the symptoms flare and payback but I want to focus on the victory.

My allocated nurse this morning asked me what I wanted to do today in my 1:1 time so I said I'd like to get off the ward and go outside. Normally it would just be a wonder round such as the nearby little Mandela Garden. But then I thought about giving my venture outside a purse, a mission and to challenge myself. I I looked up to see if Leeds had a Flying Tiger store which sadly they didn't but they did have a Paperchase (I'd like to shop locally but that would be too much research to find somewhere and I know that Paperchase has things I like). If I'd probably looked up going shopping yesterday anxiety would have gotten the better of me, but doing it spontaneously didn't give me much time to be anxious and I felt excited to go as back at home the range of shops is severely depleted.

So after seeing where Paperchase was I asked my nurse if there was time and staffing for us to go and there was and she thought it would be really positive.

So I got ready and off we went. To make things easier I went in the ward's electric wheelchair (which is controlled by my nurse instead of usually whereby I'd have the controller).

I did get quite anxious but my nurse just said to try and focus of things that I could see so or example a nice rucksack someone had on, or a person's sparkly jumper or the nice pattern on someone's skirt. Once we got into Paperchase I was so focused on looking at things and trying to find what I was after that everything else sort of zoned out.

I got some mini rainbow notecards, a colourful writing set and some postcards and I treated myself to a nice pen.

On the way back my anxiety had started to come down. Being in a wheelchair can be difficult, people don't hear you when you ask if you could please get past or when they walk in front of you as they don't register that you're there and then glare at you for catching their ankles. In one part of the city's shopping there was a snow machine and a boy was so busy looking at it that he full on walked into me (and it did hurt a bit), I try to look at in humorously but I was miffed that neither the nor the adults with him apologised.

We got  back to the hospital but at weekends the wing where the ward is you can't get into at weekends. Both me and my nurse tried calling the ward but the phone was engaged. Thankfully the ward was on the ground floor and my nurse managed to get to attention of another staff member who let us in.

It was a huge challenge for me and a little 'well done me' moment. I'm now utterly exhausted but I'm trying to focus on the positives of today.

International Day for Persons With Disabilities 2019

So as the title of this blog post suggests, today is International Day for Persons With Disabilities. This day first began in 1992 by the United Nations General Assembly.

This day aims to promote the rights and wellbeing of disabled people is all parts of society and to increase awareness of the challenges disabled people all over the world face in many different aspects including political, social, economic and culture.

When I was recently scrolling through the BBC's news app I saw a business article stating that the Office for National Statistics had found that last year the median pay for disabled employee was £10.63 an hour whilst non-disabled employed earnings were £12.11  (you can read the article here). How is this fair especially when you have you factor in the extra costs many disabled people face for things like utility bills, equipment, care, therapies, insurance and more. The disability charity Scope has found that on average disabled people face extra costs of £583 a month and 1 in 5 disabled people extra costs of more than £1000 a month. Along with these finding Scope have found that on average a disabled person's extra costs are equivalent to around half of their income (exculding housing costs). Along with this findings for a disable person money doesn't go as far and on average £100 for a non-disabled person is equivalent to just £68 for someone with a disability. (Scope's 'Extra Costs' Campagn)

How is all this fair?

As well as lower pay and extra costs for disabled there is also the lack of access whether this be physically such as getting into buildings or lack of suitable toilet facilities or social barriers like how many subtitled cinema screenings aren't at reasonable times. There's also the visibility of disabled people, such as using disabled actors for disabled parts in TV and film or in the modelling industry - far too often I see older people being used as models for equipment and aids and it puts me off a times as I think 'I'm too young to be needing this'.

Yes the world has come a long way in terms of the social model of disability (read my blog post on the medical and social model of disability here), but there is still a long way to go.

NICPM Update: 2nd December 2019

I knew rehab wouldn't be easy, but I didn't think it would be this hard; especially emotionally. I've had my fair share of wobbles and times where my body rebels and I just can't physically or emotionally take any more and I just have to try and trying is all I can do and what I have been doing even when I feel like I can't carry on.

When you're in the midst of something you became so focused on the moment that you forget to see the journey that you're on and without really realising I've slowly stated to make progress which should usually be a big 'woo-hoo' moment, but actually for me, it's scary. 

Just before I came here after 5/6 years of fighting I finally got a care package and I'm scared of losing that when I leave here, I've also been thinking a lot about the 'what next' plan, such as what services like an M.E service for example I'd like to be under as an outpatient to continue the support here. Staff try to steer me to just think of the day ahead of me but discharge still worries me a lot.

I'm also not an assertive person, but I'd like to be. There are times when I'd like to be more assertive about my care here when staff suggest I do something like my breakfast routine ad when I'm having a bad day I'd like to be more assertive in saying that today I don't feel able to do my breakfast plan, or at least parts of it.

I saw my Occupational Therapist (OT) this morning and he wants me to wake up at an earlier time, again me not being assertive I tried my hardest to say how much of a struggle that would be but later on today I was crying my eyes out to the staff member doing a 1:1 (individual time with staff) how much I'm struggling, how difficult mornings are, how I don't feel I can be assertive, how much my body is struggling and how difficult I'm finding things emotionally.

Today I've had a few seizures or 'non-epileptic episodes' which on top of showering I'm looking forward to getting into bed tonight, especially now I have my duvet back (it had to go in the washing machine at the weekend which then broke) as it's starting to get colder now.

Yesterday was eventful, but not the good kind. I stood up in the bathroom and my hip joint slipped out of place and I landed on the bathroom floor furthering ame to dislocate my shoulder (my joints go out more than I do - an insiders joke amongst those with hypermobility). Annoyingly here the emergency red cord are on a long plastic rod which doesn't reach the floor and it was during mealtime so all I could do, like when I've fallen before is just call out for help. After a while another patient heard me and asked out if I'd fallen over and she went and got a member of staff who called for an ambulance. With the help of some entonox (magic gas which if used sparingly and with great care I believe more patients with conditions like hypermobility disorders should, if felt necessary, should be able to have a supply of at home to reduce the need for ambulances and help patient self-manage their condition, but that's a conversation for another day), and with the help of the paramedics and some manipulation (this wouldn't be the case if you weren't hypermobile, able to reposition my hip; thankfully it had only partially dislocated. It's difficult as hypermobility dislocations are different in some ways to 'normal' dislocations so often they're not as well understood as was the case yesterday. But my experience with the paramedics yesterday was thankfully much better than the first experience I had when I first arrived here.

Anyway nothing is much new. My weeks are busy with OT, physio, psychology and sessions with staff as well as activities. I especially enjoy Boccia but tonight we did origami whch was good. Another patient taught us all how to make flowers. Last Friday was the final sensory group series session and we made aromatherapy sprays to make a start on making ourself a sensory kit. Some of the 'therapeutic activities' I've done with staff or am planning to do are going to Tesco, cooking (scrambled eggs on toast), and going for coffee. In my 1:1 times I also like going off the ward outside.

Not this weekend thats jus been but the weekend before my Dad and stepmum came and we went to Leeds Art Gallery and we went for coffee which was nice.

Today I received my bear made by Amie who runs Bear Has for M.E. Amie has Severe M.E and to occupy herself she knits bears for other people living with the condition. I feel so blessed to have come across such a wonderful lady who is so generous with her money time and especially her energy which I know having M.E too is so very precious.