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!

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.

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.

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.

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.

Goodbye 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.

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.

Living without a diagnosis

When I first started to become unwell in 2013 no one could tell me what was wrong with me; my symptoms where just 'medically unexplained'. At first I just thought things would be temporary. However as time went by my symptoms continued and worsened and as they did and I still received no answers I started to question myself. Names for illnesses floated around but nothing was certain and my symptoms remained 'medically unexplained'. It frustrated and upset me as what I was going through was real, especially the times when I wasn't believed or was told my symptoms where psychosomatic or 'all in my mind' which lead to receiving poor care from professionals.

Living without a diagnosis was so hard as when I went to the hospital or saw another professional like my GP or when I was asked what was wrong with me I had no answers to give. It was so difficult on many levels as what I was going through was real but it wasn't backed up by a diagnosis. Having no diagnosis to give also made it hard when I was applying for ESA and PIP - government benefits for when you're too unwell to work or to cover the extra costs incurred due to having a chronic illness/disability. Having no diagnosis also meant that I got little in the way of treatment for my symptoms. I would have a seizure but paramedics where reluctant to give me the medication I needed or my GP was hesitant to prescribe medication for my symptoms as there are no prescribing guidelines when you don’t have a diagnosis or would have nowhere to refer me to for specialist care. Other aspects of my 'medically unexplained symptoms' where also met with lack of surety such as believing that my joints where actually dislocating or I was having the amount of migraines I was claiming to have. With regards to my high levels of fatigue my GP on a number of occasion did diagnose me with 'Post Viral Fatigue Syndrome' but I was told that I would soon recover, but I never did.

It wasn't until the July 4th in 2017 that I was told I had M.E. (Myalgic Encephalomyelitis) by my neurologist Professor Mark Edwards. Finally I could stop blaming myself for what I was going through and the symptoms I was experiencing were real and not imagined or 'all in my head'. I had a name to give to people to explain why I was having this symptom or that symptom. Further to that my neurologist noted my hypermobility and referred me onto a rheumatologist and later I would be diagnosed with Hypermobility Spectrum Disorder/Ehlers-Danlos Syndrome (over the years professionals have used both HSD and hEDS but there is little difference between the two). 

Looking at that particular diagnosis it took me back to my childhood and there I can now clearly see the signs of my EDS then. EDS is a hereditary connective tissue disorder; it was something I was born with but as often the case with EDS many people with the condition don't get their diagnosis until they are much older. I was born with a spinal curvature, hyperlordosis where my lower spine acutely curves inwards. I'm no stranger to back pain and joint pain due to my hyperlordosis but growing up my joint and related pain was always dismissed as 'growing pain' but now I can clearly see the signs of my EDS. I was a dancer and being hypermobile I used it to my advantage despite my pain. But again looking back my "growing pains" where dismissed as that and no one looked further into it.

I must say that many people are hypermobile to one degree or another and a lot of these people use it to their advantage, especially dancers, gymnasts and athletes. However the vast majority of those who do have hypermobility do not have EDS. Hopefully one day like the other forms of EDS a genetic marker will be found to help give people like me diagnosis, especially treating the condition early on such as when I was younger instead of leaving it until I was older and had developed many complications as a result of my EDS.

Coming to the present day I now have other diagnosis, often ones that come secondary to my 'main' illnesses, such as PoTS (Postural Orthostatic Tachycardia Syndrome).

Now I have a diagnosis (or a few as the case is now) means I can get the care I need as generally when you have a diagnosis you have NICE guidelines to tell professionals how to treat and care for me. I've also found that now I have names to give to people like when I dislocate a joint I can explain that I have EDS or my extreme fatigue is because I have M.E. and it’s more than ‘just feeling tired’. Most of the time my symptoms are now understood, though I do find myself in situations where I'm not believed because my illnesses are not that well understood. On the whole though now I have my diagnosis' things are much better and though my health isn't great I'm getting the care and support I need compared to the time when my symptoms where 'medically unexplained'.