Tuesday, 1 May 2018

M.E. On: My Health This Year

Disappointment is how I'd sum up the feeling of 2018 so far. Towards the end of last year, I was tiring more easily, but put it down to doing more than usual during the festive period. It had also been an eventful 2017, with the diagnosis of gallstones and eventual removal of my gallbladder in June after 7 months of agonising, random attacks. It's no surprise that I spent a lot of the year in clinics and hospitals, which was a big increase on the activity I was accustomed to. Plus there was the after-effects of an attack, which I felt for several days and all the worry that went with not knowing what was going on (before diagnosis) or when I'd next fall ill. As well as physically, mentally, it took it's toll over the year. A year of worry and non-stop medical appointments is no fun for anyone. Besides this, the surgeon had warned me pre-surgery that going ahead with the operation could worsen my M.E. permanently. This was a big shock to me and one of the scariest things to hear and although on that day, I was determined I wasn't leaving without agreeing to be operated on, it's been in the back of my mind since he said it. I know I couldn't have continued living the way I was with gallstones, but had I just made a decision that would change my life for the worse, forever?
face of MYALGIC ENCEPHALOMYELITIS sufferer with blue hair, smiling

Well, I seemed to recover well from the operation. Icky wounds aside, after a few days I felt brighter, could move around easier and was pretty much back to how I was, pre-op, within a few weeks. Despite concerns of me being in the category more likely to suffer complications and more likely to be of the severe variety, I felt I'd dodged a bullet. With that in mind, I decided 2018 was the opportunity for a fresh start for me, a year not to be filled with medical appointments and I wanted to make changes. I'd become a bit bogged down with blogging, taking on more than I could handle and as a result, enjoying it less than I used to. So I realised I needed to do more for myself.

The meditation and mindfulness I'd started a few years earlier had fallen by the wayside mostly and I desperately wanted to pick up old interests and have more to focus on than just blogging. My real-life social-life is non existent, so I wanted to be more social online (in Facebook groups and that sort of thing). It was a very optimistic vision, I'm not quite sure where I thought I'd find the energy (when I was already struggling), but I miss designing, sewing, sketching and all those interests that were 'me' pre-illness. I can't put into words how much I want to be able to do that again, it was immensely hard giving them all up 16 years ago and over the past year or so, I've been getting serious cravings to try again. Then there's little things like wanting my shoe room finished (seriously how many years is it going to sit idle?) or get dressed-up on a daily basis or bake! I know they may seem simple to an able-bodied person, but it's weird to me that I've never baked in 16 years and I long to be able to do something like that. Like I say, it was very idealistic and I hadn't really thought through how I would implement these changes. As it turns out, I didn't need to, as my health continued to deteriorate in January.

The extra tiredness and lack of energy only increased, even although all the festivities had passed. I was (and still am) falling asleep multiple times a day, sometimes 3 or 4 times between waking-up in the morning and lunchtime (and I don't get up until late morning as it is)! There's literally been 2 days this year that I haven't fallen asleep during the day. I'm finding it's taking until late afternoon for me to muster up enough energy to wash my face and once I've done so, I'm knackered again and need to sleep. I have very few hours in a day when I'm awake and obviously I'm not in any condition during those to be creative and write or take photos etc, so blogging and everything else has come to a standstill. Usually I hate February (I've said this before but it's one of those cold, dark months when nothing exciting happens and people die), but January (and March and April) became my February! It was a massive backwards step and affected my mood hugely.

I don't know if I was more annoyed at myself for once again dreaming and hoping of being able to do something I couldn't or at the illness for being it's usual crappy self. My mental health had already taken a battering throughout that turbulent year and it was like being kicked when I was down. There is a limit on how much disappointment one person can take.  I do try and stay upbeat and I know my gut reaction is to not let on how serious or glum things are, it's just my way of coping and dealing with it, but the mask well and truly slipped in 2018. I was getting up each day to eat and sleep and go back to bed. I don't care what anyone says about "at least you are alive", that's no way to live and that's pretty much how it's been for 4 months. It was depressing for me and depressing for my family to watch.  The dream scenario is that during time-off from blogging I'm relaxing, K-drama binging, meditating and taking some much needed time for myself. I wasn't. I felt too ill for any of that and just slept.  It felt like I was just wasting away.

I've been much more sensitive to noise and light and suffering from more migraines as a result. Some were so painful I honestly expected to die in my sleep from them. I've been having vivid dreams that are actually tiring me out.  I wake up knackered from whatever I was trying to do in my sleep!  I've been going from freezing cold to boiling.  I have a scarf, blanket and jumper all sitting beside me and am at various stages of dress/undress throughout the day and night!  My skin broke-out in acne, worse than I've had in years and flares up every time my period is due,  My spots always last a really long time, so it feels like I'm in a never-ending cycle of them.  My period is pretty much coming every 3 weeks and really takes it out of me. Having to get up to the toilet more often and deal with that sluggish feeling and cramps on top of already feeling terrible is just too much. All my nails broke painfully far down and they've struggled to regrow. My hair needs recoloured, but I have no energy for it and sometimes it's been so tangled out of the shower, I've cried trying to brush it and threatened to cut it all off (actually some bits didn't survive, RIP). I'm comfort eating and putting on the pounds I lost last year, but I feel I can't control my eating on top of dealing with everything else, so don't care. My self-esteem is at an all-time low. I've tried to rectify it, but usually I'm just too tired to do anything about it.

I was convinced this was some sort of delayed complication from surgery and that this was the way things were going to be from now on. A progression or regression I suppose, of the M.E. and it was here to stay. During this time, I had my dental check-up (gums aren't great again (probably because I'm so unwell), so expensive trips to the hygienist planned as my dentist knows I'm unable to travel to the (free) dental hospital) and my 2 yearly opticians check-up. I told him about the migraines, he wasn't too concerned as I have suffered previously. I'd already booked an appointment with my GP to discuss them as well. He also wasn't too concerned, but said he'd like to do blood tests to see if there was something else causing this deterioration. Already the months had filled up with only medical related outings and it was looking a lot like 2017, which just added to my low mood. There were some days I really just didn't see the point.

The bloods came back and I was a little surprised to learn the cause was my iron again. I really had resigned myself to this being my way of life now, so it was somewhat consoling to know something could be done. While my M.E. has always been severe enough to prevent me from working and managing day to day tasks by myself, I deteriorated in 2014 and stuck at the severe level where I'm housebound or can't get out of the house independently and am unable for much else. There were several reasons for this, the main being an iron deficiency. You may recall I tried pills for months with little effect, so had to undergo 3 iron infusions at the local hospital. While my iron levels increased greatly afterwards, my energy levels didn't. Gradually over time, I regained a little strength, but on the whole this new state remained. So, my GP and I agreed there was no point wasting time on pills this time and instead went straight to the infusions. You get just the one treatment instead of three now ("turbo booster" as I call it) and I had that a few weeks ago.

Before then though, I slipped a disc in my back. Things just couldn't get any worse could they? I wasn't even doing anything at the time, but I think it was as a result of having to sit (trapped in the same position) for a couple of hours one night filling out forms. The slipped disc meant I couldn't straighten myself at all. It was extremely debilitating and painful (a nervy type pain rather muscular) when I tried to move. Oddly, my mood lifted during this time. I think when things get ridiculously tough, something in me snaps and I power through. I'll never forget the failed attempt at walking to the bathroom with my Mum and 2 walking sticks, where I only managed one step before collapsing. My arms were shaking from weakness and my hips just didn't have the power to move my legs to walk. Tears were streaming down my face from how pathetic the situation was, but I couldn't stop laughing either! Anyway, I managed to get a prescription over the phone (a bit of a palaver as the nurse wasn't willing to do anything without seeing me at the hospital, but I couldn't even make it out of the room, never mind downstairs and outside in the wheelchair) and within a week, it was back to normal (had straightened myself in 24 hours), thank goodness. So I made it to my turbo boost appointment, a supposed half hour treatment that took 4 hours and I've slept every day since! The lack of energy, tiredness and sore joints are still all there, despite the claims from the nurse that the colour had returned to my cheeks and I was looking brighter, hmmm! From my previous experience, I was doubtful of an instant recovery.

So now I'm at the stage I don't quite know what's happening.  I'm still tiring very easily and still needing extra sleeps during the day.  Some days my headaches or migraines are pretty horrific and there's been times I've actually woken up from pain in my joints.  My mood is better, but I'm still a bit fragile or feel that if something else goes wrong, it's going to knock me back.  I always wish I could end posts like this more positively, but M.E. and real life doesn't work like that.  The 2018 plan isn't even on the back-burner, it's forgotten about entirely (yet again) and I just have to concentrate on getting through each day.  I think that is what I'm taking from this, no planning, no hoping, just try and make it through each day.  It is sad and it's hard.  I didn't do anything right or wrong to deserve this, it's just been an unfortunate chain of events or circumstances and is the way it is.

I have another post coming up, with how this has affected my ability to blog and where I go from here, so look out for that.

M.E. On are a continuing series of posts aimed at raising awareness of and detailing what it's like living with chronic illness (Myalgic Encephalomyelitis/M.E.) through discussion of a variety of topics.  I was diagnosed in 2002 after contracting glandular fever earlier that year.  Unless otherwise stated, all opinions and experiences are my own.  If there's a specific topic you would like me to cover or you have any questions, please comment below and I'll do my best to address those in future blog posts.     


  1. Thank you for such a frank and realistic representation of ME. So much of the stuff I find online about ME is about how people don't understand it or articles portrayed as ways to manage the condition but that don't actually tell you anything. My symptoms started in early 2016, after what docs now suspect was glandular fever, and I reached out to you on Instagram. Back then you lifted my mood and even though this post is speaking about all the rubbish you've been through the past year+ it still lifts my mood to know what I'm going through is "normal" for this condition. Thank you :)

  2. ME is a complete bugger isn't it. Every time I read the next sentence of what was going to be thrown at you, I felt so sad for you and the thought of you collapsing trying to make it to the bathroom was awful. You do realise how incredibly strong you are to put up with all this, don't you? I am a complete wuss with any pain and I am in awe of you and your amazing tenacity. You are NOT remotely useless, you are a good person who has a horrid illness so never feel that. You inspire me. xxx

  3. Thank you for sharing such a real account of the effects which your ME has on you. I'm so sorry to hear what you've been going through but I agree with Kezzie's comment. You are strong and inspiring. x


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