Life update

I wanted to write a more personal post and share with you a bit of a life update.

At the end of last year my main PA at the time went on long-term sickness leave which left me even more reliant upon agency care for most of my care. I had another PA who did weekday evenings and alternate weekends but the agency did my “main” care. (I say “main” care because they were getting me ready in the morning but they weren’t fully meeting my care needs). Due to the nature of agency care being much more expensive and with my Direct Payments I can’t afford the 4½ hours of care I usually have and need during the day and I’m was only able to afford 1½ hours of care with the agency. This meant that I had to prioritise what care the agency did for me which was getting me washed and dressed. I did try to get the agency carers to do my breakfast and run my bath as well in that time but they just were not that competent enough despite the fact that my PA showed one of the agency carers how to do my breakfast, run my bath and get me washed and dressed and do other tasks all within 90 minutes. I was having my care rushed, 1½ hours might sound a long time for getting a bath and getting washed (plus a few other minor tasks like washing my pots) but it really isn’t, especially when I need to pace tasks and go slowly (especially on days when I’m not feeling great which is most of the time at the moment), plus when you have incompetent carers and you’re constantly having to explain things to them. Rushing my care I find is more painful, exhausting and exacerbates my Post Exertion Malaise later in the day as well as the PEM from all the things I was having to do for myself. I am able to do things like get my breakfast, run a bath and put laundry in the machine but having Energy Limiting Illnesses makes doing these takes a lot harder. All together it quickly significantly impacted on my overall health and I wasn’t having much of a life. I was struggling more with my physical health; my M.E was getting worse and when I was doing my Functional Capacity questionnaire each month for my Visible app my score began dropping most months and continues to do so evidencing a decline in my health and ability to do things in a variety of different aspects of my life. It was also having a massive negative impact on my mental health when I was already struggling with my mental health.

Mine & Emily’s pottery painting pieces 

I’m still stuck in this worse state of M.E now but it’s sort-of become my ‘new normal’. I permanently feel like I’m fighting PEM. I wake up tired and in pain; not helped by my insomnia. I do my morning routine with my PA. I maybe do an activity, I rest and then around 2/3pm the PEM hits me from doing my morning routine each day. The rest of the day is spent in a flare-up. Some days I’m worse than I am on other days but I always feel like I’m running on a low battery and my brain is made out of fudge. Occasionally I can do bigger things, sometimes I have to do bigger things like the past few months I’ve had a lot of appointments with respiratory and with radiology because of my pneumonia. I’ve also had my pre-assessment for my bladder surgery. Occasionally and with planning and preparation I manage to do bigger enjoyable things like Emily and I went pottery painting which we both enjoyed. Also my friends Paul took me for a coffee and we took my Batec and had a stROLL along the seafront, something I’ve wanted to do for a very long time. To me despite the huge crash from going out sometimes I feel the PEM is worth it if I’ve done something I enjoyed. I do get down sometimes about how my M.E is at the moment. Sometimes when I’m feeling really crashed and I’m in a lot of pain and my symptoms are just so exacerbated and I’m struggling to function and important to do jobs like sorting my care situation out are piling up I just feel like I’m existing because all I’m able to do is the bare basics, the rest I’m too tired to do, but I’m always a person to look for the positives. I’m glad I have my own home and I have a great set-up around my bed because I spend so much time here. I’m grateful I’m managing financially despite the cost of living along with the extra costs that come with being disabled. I’m thankful I have my wheelchair. I’m also so grateful to have Alison and Emily as my PA’s and they go above and beyond for me and my Dad is so supportive too. I have some great pen pals who are understanding that I’m slow to reply or all I’m able to reply with at the moment is a postcard. There are so many positives I could list.

M.E is awful at whatever level you’re at. My really good friend has mild M.E but she still really struggles and has to give up a lot in her life to manage her M.E just so she is able to work part-time. I hate it in groups when people compare as to who is more worse off and makes out that someone’s situation is a papercut compared to their situation. I’ve had experiences like that in groups myself when people haven’t fully understood what I’ve written and make out that they’re so unwell and unable to do anything at all compared to me.

I do hope that I’ll get back to where I was this time last year but for now I’ve accepted and adapted to this new normal.

I also dislike agency care in general and I was having problems with the agency carers. I’ve never been a huge fan of agency care and I much prefer PA care as you get consistently and you build up a positive relationship with your PA’s and I find I have far fewer problems with PA’s compared to all the problems I had with agency carers over the years.

Eventually the PA who was on long-term sickness leave resigned so I was stuck with the agency carers until I could sort out finding a new PA. Thankfully in February my evening PA Alison took on my daytime care four days a week and I was so happy as we got on so well and she was an amazing PA and person. I then interviewed another person and we hit it off straight away and Emily works for me one day a week. I’m still looking for a third PA for the alternate weekend - I’ve been looking for someone for several years now but no luck so for now I’m stuck using agency care.

As well as my M.E, in mid December I got taken to the Emergency Department and it was found that my left lung was full of pneumonia. They wanted to admit me for IV antibiotics but because of my M.E and autism I know that hospitals aren’t the best environment for me. 

I need support with all aspects of daily living and a quiet low sensory environment and being in hospital it’s hard to meet my needs. At home I have my profiling bed, my quiet hybrid airflow mattress (the pump for it is nice and quiet and it has memory foam over the airflow tubes so I find it very comfortable compared to other airflow mattresses). I also have a great set-up around my bed with various accessories attached to my bed and an organised bedside table with everything I need. Spending so much time here in bed I’ve developed the set-up that works for me especially when I’m really unwell and I can’t replicate that when I’m in hospital. Like I can’t have my hands-free drinking bottles, my Flexzi stand or my body pillow, all things I find essential when I’m not well. I also have 1:1 care at home in which I can have more time to do my care compared to when I’m being cared for by a nurse or Healthcare Support Worker in hospital. Food is also better especially as my diet is very restricted due to allergies and being on a Low FODMAP diet. (I do have an inside source in the hospital catering department as my stepmum works in the catering department at my local hospital so that helps a little.)

I argued my case to several doctors explaining repeatedly why hospital isn’t the best place for me and why my home is as they really did want me to stay in. Looking back now I was really poorly and I could have done with those IV antibiotics but with how unwell I was I needed the environment I have at home and longer care time. I think I would have become more unwell in hospital due to the hospital environment. Personally I feel that more provision should be made in the community to provide treatment to patients who need things like IV antibiotics or infusions where hospitals just aren’t a suitable place for them for whatever reason. I really hope this is one of the things that is debated in parliament when they discuss care of patients with severe and very severe M.E.

It took several months for me to recover from my pneumonia. I had to have a couple of x-rays and CT scans and well as an ultrasound as I had fluid in my lung as well as my lung also partially collapsing. When I saw my CT scan I wasn’t surprised why I was struggling to breathe as the fluid was taking over so much space in my lung. I was also on several courses of antibiotics and steroids so that added to me feeling really rubbish.

My Ehlers-Danlos has also thrown up some complications which have been ongoing for a while. My bladder has been problematic and I’m waiting for a surgery date to have some Botox but having EDS makes having surgery more complex. I’ll also have to stay in hospital so I’m not looking forward to that for the reasons mentioned above. I’m also on the waiting list to see gastroenterology as my EDS has been causing complications with that specialty too. My EDS has affected my digestive system for a while but my symptoms have recently worsened. People often think that EDS is just about ‘being bendy’ but they don’t realise the problems it causes with people’s organs as well other things as well. Like I recently learnt that because of the faulty connective tissue in the brain, neurodivergence, autism and ADHD, is more prevalent in people with EDS.

I find it hard at my local hospital as they rarely understand the diagnosis’s I have and how they affect me and make me a bit different to other patients. Like how because of my EDS local anaesthetic rarely works on me or my needs as someone with autism and/or M.E. I also have some medical PTSD with my cPTSD and part of that is from gaslighting from healthcare professionals. When you have chronic illnesses you become an ‘expert by experience’ but some healthcare professionals don’t like that; they don’t like you using medical terminology like tachycardia so instead I downplay it and say I have a fast heart rate for example. I also hate the 1-3 pain score they use at my local hospital instead of the 1-10 scoring system as it’s harder to give a pain sore when there’s only three options, and when you say 3 they don’t believe me because I’m used to living with high levels of number three pain 24/7. Then there’s the times when they think everything is all in my head and I’m making my symptoms up or I’m over exaggerating. I find medical professionals especially don’t understand Functional Neurological Disorder and mistake it for something psychiatric like Factious Disorder. 

Another update is the fact that I’ve been struggling with anorexia again for just over a year. I’m in outpatient therapy at the moment but I’m finding recovery tough (which is a total understatement). I’ve just found it hard to talk about but I hope to write more open and honestly about eating disorders and mental health on this blog. I say again because I had anorexia for many years as a teenager. I’m receiving good support and therapy at the moment. Recovery just isn’t linear.

One of the things I’ve realised is just how much my Batec helps my mental health. Just getting outside, putting my headphones on with a podcast playing just helps me so much. My Batec honesty has to be one of the best things I’ve ever bought.

I still need to sort out my care situation. I had to get rid of my previous care agency as there was just too many things that were red flags. I hope to find a PA, I’ve been looking for 6 years to have a third PA for the weekends. I did interview one person recently but I just didn’t feel they would be suitable. Alison and Emily are helping me out as much as possible and my Dad as well. I’m meeting with a social worker next week. I did call one care agency but I had to rearrange and they haven’t called me back to rearrange so I maybe need to contact another agency. I also need to report my previous agency to adult social care because of all the red flags. I’m just so tired at the moment that getting things like emails and phones calls done are a challenge.

I know I’ve rambled on a bit and maybe paragraphs aren’t quite in order but that’s my life update so far.