Tuesday, 17 May 2022

I've been missing since 2013

The 12th May marked M.E Awareness Day. I have been missing since 2013; the life I had planned out for me back in 2012 is now just something I dreamt up. I can't think about the past of the future, I must focus on the hear and now; getting from one hour to the next and at the end of the day it's exhausting to know that I will have to repeat all my daily struggles once again.

I started to become unwell in 2013 - that's sort of when my initial symptoms became progressively worse but becoming unwell was something gradual and I just thought it was because I was overworked at Uni and in February was when I had to leave Uni.

Over time my health worsened; I kept going to my GP and was repeatedly told that I had Post-Viral Fatigue Syndrome and my symptoms would ease. But they never did and my symptoms slowly worsened.

Fast forward to the 4th July 2017. I had my first appointment with my FND neurologist and in that appointment my diagnosis of FND was confirmed though some of my symptoms didn't fit with FND and so I was also told that I had M.E. Before the I hadn't heard of M.E and there was no further forwarding referral to an M.E service so I was left to go home, research M.E and find out how to live with it.

I'd say back then my M.E would have been classed as 'moderate' on the M.E Disability Rating Scale but now my M.E has been classed as 'severe' but personally I feel that whether your M.E is mild or severe it is still a difficult illness to manage not just practically but in terms of how poorly understood and under funded and researched the condition is.


Since 2013 I have been missing from education, meeting friends, going to social events, going on holiday, employment, voluntary work, on my bad days even leaving my bed and more. M.E has left me feeling invisible to the world and I only really see the same few faces. 

M.E has left me dealing with a myriad of different symptoms affecting my whole body including immune system - it is much much more than 'simply feeling tired'. 

I feel some days as though M.E has taken over and I'm not me anymore; I am M.E.

I try to be positive as the alternative is to be miserable and I'm not one of those 'woe is me' kinda people. When I first became unwell I did feel like being ill was all I had in my life but when I had some sessions with a health psychologist I started to see the other parts of me. I still have to work within the restrictions of my M.E and make adjustments when it gets worse as it has done lately (hence my lack of blogging as well as just sharing videos on my YouTube channel when my health allows) but it's all about balance as currently there is no cure for M.E.

I'm not quite sure how to end this blog post. I've just been typing here and there as my body allows and ironically I seem to have finished this post on a Tuesday which was the day that I used to post on. 

I think in this post I wanted to briefly share the timeline I've been on and also how invisible M.E makes me feel as well as being part of the millions of people missing due to M.E. I wish I could say that M.E is getting greater understanding and research but sadly that is not the case. Just know that if you also have M.E as invisible and missing as you may feel you are not as alone as you may feel you are.

Tuesday, 19 April 2022

I'm back! - Plus my recent hospital admission

Apologies for not posting for a few weeks, I had rather a lot going on with a combination of not being too well and preparing for my hospital admission.

Last week I had surgery at UCLH in London (my specialists are all down there). Compared to my local hospital the care I got on hospital was amazing. I'd been in contact with Sarah the special needs co-ordinator to ensure that my needs where met whilst I was in hospital such as ensuring I had a side room but also just to ease my anxiety. I was also given a bed the day before my surgery as I lived so far away from the hospital to save me travelling in the night and going more-or-less straight to theatre.

My hospital admission didn't get off to a good start. The night before my admission I called patient transport to get a pick up time for the following morning and was told that my assigned crew had tested positive for covid. Both myself and Dad kept calling for updates but eventually we where just told that I would't be getting transport. This was so hard to hear as long distance travelling takes a huge toll on my body and I require someone sat with me in the back of the ambulance in case I become unwell and I also need to travel on a stretcher. Thankfully Dad's a teacher and was off for the holidays and he didn't want me to miss my surgery or waste NHS money especially as my surgery was a special arrangement. So Dad drove me down and we got to UCLH. 

Dad couldn't see me to the ward as there where no disabled parking spaces so he could only drop me off in the atrium. The receptionists couldn't find me and I was getting in a panic. So I called Sarah and she came and met me and helped the receptionist's find me and them Sarah saw me up to the ward and my room.

I was very well prepared with my hospital passport and having my own room was so helpful as I could make it a better environment for me with the blinds down and it was quieter and I didn't have to worry as much about picking bugs up from other patients.

The staff where lovely; introducing themselves to me as my assigned nurse, ensuring I had all female care. Call bells where answered quickly as was medication when I asked if I could have pain relief or anti sickness. I felt listened to like when I said that due to my PoTS when I'm nil-by-mouth I'd need supplemental IV fluids. I also felt like the staff had time for me such as to help me get comfortable and changing positions to relieve my pressure areas and regularly checking my pressure areas as well as helping me with other care tasks and also getting a wash and a fresh change of clothes or just to talk about the audiobooks I'd been listening too or even just making me a coffee. So often in the past especially in my local hospital my care experiences where so different; waiting and waiting for my call bell to be answered, for pain relief to be given to me or wet clothes and bedding to be changed, bing told I have to wait for catering to have a drink etc. Also at UCLH though I didn't eat much due to my nausea the meal I did manage was really nice - chickpea and spinach curry.

My surgery went well and they knew before that I was at high risk of seizures post-op so I was given lots of medication to reduce my seizures and I was ITU for a few days after my surgery. I was put on a PCA, Patient Controlled Analgesic, so I had a button that I pressed whenever I needed some pain relief without having to ask the nurses. 

During my admission I got through plenty of audiobooks!

The journey home was difficult as I found the ambulance too bright and the transport crew where blasting music plus the motion of the vehicle so I just put my noice cancelling earbuds in and listened to my book and managed to sleep for a while.

When I'm in hospital I do like having the nurses take over my care giving me a bit of a break but I am glad to be home in my own bed and I'm just resting. I will admit I have felt quite low emotionally. Plus coming home of the Easter Bank Holiday I haven't been able to reach the community nurses or my GP practice. My nurse is coming on tomorrow (19th) and Diane, my PA, is back Wednesday so I'm just muddling though as best I can.

I want to give a shout out to my friend Elise who has been so supportive helping me out with advice, tips and support. It was also lovely to come home to mail from friends and pen pals.

Currently I'm just taking each day moment by moment both practically and emotionally. I've got at lot to deal with and I'm hoping I'll fall into a rhythm soon and that I'll have the energy to do some crafting soon as I have a few birthday's coming up and letters to reply to.

Tuesday, 29 March 2022

Payback | M.E Symptoms

Payback is one of my key symptoms especially in regards to my M.E. With everything I do I have to pay for it to varying degrees. Sometimes the payback isn't too bad and I'll just need to rest and take it easy depending on what I've done. If I've done a 'big thing' (which to most people probably isn't a big thing) the payback will be more severe and will include me experiencing Post-Exertion Malaise (PEM) - a key symptom of M.E.

Some of my payback and PEM symptoms include a flare-up of symptoms including increased pain; fatigue; malaise (generally feeling unwell); my immune flaring up in which I experience severe flu/viral-like symptoms; reduced cognitive function; headaches/migraines, autonomic issues - the list goes on. Basically my body just has a massive tantrum because it's had to do something!

Experiencing payback is really difficult because I have to do things and even with most tasks having the support of my PA, Diane, I still get payback but having my PA does really help to make life much easier for me. Some of what Diane does helps to minimise at times the level of payback I experience. So for example getting a bath is something I have to do and it's very exhausting for me. I do what I can in the bath, mainly washing my face and brushing my teeth and the rest of everything that needs doing Diane does. - See my vlog with my PA where I share the different ways in which Diane supports and enables me.

People often jump to M.E being about "feeling tired" but often people miss what exacerbates a person's fatigue (as well as the severity of a person's fatigue as well as the many many other symptoms of M.E which people don't comprehend and just jump to "feeling tired"). Payback is what adds to the fatigue and other symptoms of M.E. Yes I do feel tired with little reason; I wake up feeling more tired than I went to bed!

A ceramic blue cup being held under a tap with the water overflowing out of the overfilled cup
Payback is like a dripping tap. As your day goes on every little or big things you do has a drip drip effect and each drip (a) takes more of your precious limited energy and (b) fills up your little cup of fatigue. I say a little cup as it doesn't take much to overflow the cup to leave me utterly exhausted the point where that's me done for the day.

There are things that I find helps me to manage the payback (and other aspects of my M.E). Pacing and activity management play a huge part in helping me get through the day. I limit activities, depending on the activity to a set time period so I'm not doing an activity for longer than I can reasonably do. During the day I do a mixture of low-level activities (like laying and listening to a podcast episode) to more energy taking activities like crafting or letter writing. I also have set periodic rest periods for 30-60 minuets during the day to allow my body to pause. Resting doesn't recharge my energy levels and give me energy back but just stopping quite literally really helps me to just keep going until I can wind-down for bed.

Tuesday, 22 March 2022

Another little update

Since my last update back in June a lot has happened.

Firstly I had a nice Christmas. It was quiet and low-key which made it much more manageable especially for my M.E. Also over the Christmas period it was good to see my wider family who we don't see often including two of my cousins who I haven't seen in several years.


Health update

My health has been going downhill. My M.E is much more of a challenge; I think it's just been an accumulation of events and my body has struggled to recover before I hit the next hurdle. At first I thought that the state that my M.E is in now would be temporary but months on of feeling permanently exhausted and struggling to function I'm now having to accept that this may be my 'new normal' from now on. However what has help this time compared to previous declines with my M.E is some of the things that I learnt during my hospital admission in Leeds. So now I do more low-level actives, do activities for shorter periods or break them down more and have more and stick to my rest periods and daily schedule.

On top of that I've developed some additional neurological symptoms which my FND neurologist is part of condition which can alter and new symptoms can develop. These new symptoms include speech difficulties, increased muscle weakness and also increased problems with my nerves - the latter two making my double vision worse so I'm now back under the hospital for that. 

I also have a new nurse who is lovely. She's from the 'Chronic and Complex Team' so she's going to support me to try and get some things sorted for me ad come up with ways to reduce my hospital admissions and get community care and refer me and co-ordinate my care and work on my behalf with people like my GP.

Another update is the confirmation of my catheter operation. It's been cancelled a couple of times due to my complex needs but it's now confirmed and I'm due to be admitted on the 12th of April with my surgery being on the 13th - they booked a bed for me so I can travel the day before as otherwise I would have had to travel in the early hours to be at UCLH for 7am on the 13th! I'm nervous but looking for to the benefits having a catheter placed will bring.

I also now finally have a hospital profiling bed at home and my new nurse has prescribed me a hybrid mattress which has air flow in it which is massively helping with my pressure areas and my bed is making life much more comfortable and giving me more independence.


My care package

Yes another update is that I now have my care package from adult social care along with a good social worker and fab PA (I'm needing some extra PA's so hopefully I will get some extra people come along soon).


YouTube & my blog

I absolutely love my YouTube channel. My goal at the end of last year was to get to 100 subscribers and this year I wanted to reach 200 but I'm very almost at 200 subscribers already which is so so lovely. Seeing my subscriber and video watch count numbers grow really does make my day and motivates me to keep going as having a YouTube channel alongside my health problems, especially my M.E is really really hard and at times it is struggle.


I've also had a lot of success with my recent vlog video that I did with my PA Diane and I had a lot of positive feedback and comments and interaction with people. Also the recognition from the M.E Association from this video has been amazing in terms of how my blog and YouTube channel help to raise awareness of M.E.

Blog wise the M.E Association have chosen me to become one of their M.E Champion Bloggers which the recognition of the work I put into my blog and to raise awareness of living with M.E feels amazing.

A card with a patterned rainbow coloured in. Below is the original drawn design of the patterned rainbow with a pencil and pen to the side to the image.


Other random updates

I continue to be an ambassador for the Chronic Warrior Collective and I'm part of their 'Extra Card Crew' - sending mail out to those having a tough time. The CWC has also asked me to be part of their 'Artist Crew' to design cards used by those in the Extra Card Crew and with their wider projects and in the recent pack of cards I got from the CWC it was lovely to see two of my card designs have been used.

Tuesday, 15 March 2022

It never gets easier... | Eating disorders and what needs to change

Fact: eating disorders have the highest mortality rate of any mental illness

As a teenager I was very unwell entrenched in an inner battle with anorexia. I spent time in several inpatient stays. What saved me was psychotherapy though my eating disorder is still something that stays with me to this day.

On Sunday I heard of another person I knew closely from one of the inpatient units I was in who had passed away. 

I now now 6 people who have passed away from eating disorders, some have passed away from the illnesses itself others have ended their own life. Some where still very much unwell when they passed away others where well but had lasting damage to the body. Even my body has taken a toll from my own eating disorder.

Every time I hear of another life sadly lost it still hits me hard and never gets easier. At 28 I feel too young to know too many young lives taken too soon.

I still feel that more needs to be done to prevent these tragedies. Still far too often early intervention isn't happening; something I've been part of campaigning for for a lot time. More awareness is also greatly needed in places like schools and by primary care professionals such as GP's to aid early intervention and to support people like GP's to manage those who first start to show signs of developing an eating disorder. Also, something I felt was also missing was the care, or lack of, when I was discharged. I was seen by mental health services but they weren't specialists in eating disorders.

There needs to be better access to specialist eating disorder services - I know from personal experience that even when there is a specialist eating disorder service it is hard to get help from them. Often their main acceptance criteria is your BMI which is totally wrong. If you've been discharged from an impatient unit but need ongoing support post discharge your BMI will be within the normal range as well those who are in the early stages of developing an eating disorder will also have a normal BMI and for some types of eating disorders their BMI will remain within the normal range. So BMI shouldn't be used as an admittance criteria for help and support from an eating disorder service.

Hayley
I also feel that the media need to be more responsible and thoughtful of how they approach the subject of eating disorders. There are many things that I find unhelpful when I read media reports around eating disorders and I can speak from personal experience when working with the media myself to help raise awareness of eating disorders. Awareness and facts about eating disorders need to be the focus; not a person's weight or a photograph of them when they were quite unwell.

Finally I just want to end this post in memory of Hayley and everyone else who is no long here. Hopefully the inquest for Hayley will help bring improvements for those with eating disorder and something will come from her loss.

Tuesday, 8 March 2022

How my PA supports and enables me | YouTube video [CC]

Diane is my PA (Personal Assistant). I filmed this vlog over 3 days to share with you the many different ways in which Diane supports and enables me to live my life, from helping wash and dress, to going out and getting coffee to taking me to hospital appointments. Diane has been my PA for nearly a year now and we get on really well which is what you need from a PA as you spend so much time with them. We've never yet run out of things to talk about and we can have a laugh about things too. Even though we do seemingly fun things like going for coffee it's benefitting my social and emotional wellbeing as the vast majority of the time I'm housebound (the week filmed was very very unusual as I went out twice that week - normally I only go out once a week max). Also I need Diane's support when I do go out because of my medical needs such as when I had a seizure at the hospital (probably because my body was exhausted from leaving the house). Also with Diane being my PA for a while now she has become attuned to my routine and care needs from what toiletries I like to go together to managing my health care needs like when I have seizures or pass out. 

Before Diane came along I didn't know anything about the role of a PA and now I can see what a rewarding job it can be as Diane supports and enhances my life so much and in so many ways, even if it is just enabling me to enjoy a nice long hot bath. Becoming a PA isn't for everyone but it's a career I would encourage people to look into.


Click on the video to watch on YouTube

If you haven't already subscribed to my channel and you would like to (you don't have to) but it would be lovely to see you become a new subscriber and every time I do get a new subscriber it really does make me happy as I love my channel but being a disabled YouTuber it is a huge challenge.