How Are You?

How Are You?

Sorry it has taken so long for me to get around to this. Doing anything is difficult when you’re depressed. But more on that later.

For now, I’m going to give you a general update on my health. The itching went away by itself, about 3 weeks after my last post. I was taking 2 antihistamines a day but I don’t know how much of an effect they actually had since I started taking them before I went to see the doctor. Does it usually take 4-5 weeks for antihistamines to work?

But I’m explaining things out of order. The blood tests that I mentioned in my last post, all came back normal (as is always the way), so I know it wasn’t cancer, or thyroid issues, or MS, or any of the other things that I was worried about. What it did mean, was that the doctor didn’t know what was going on (as is always the way). She did, however, ask about my M.E.

I think that since “long Covid” has become a thing, doctors have suddenly become more familiar with M.E (also known as post viral fatigue) because it shares so many symptoms and similarities (ikr, who’d’ve thought🙃). The doctor asked me when I’d been diagnosed, and I told her that I hadn’t officially yet. So, she said that she would put in a referral for me. She told me that it would need her to fill out an evaluation form, and that I’d also need to have another set of bloods done and a urine test. She called me the next day to ask me some questions about how my illness effects my day to day life. But at the time I was having kind of a brain foggy day and, since I’ve been living with this condition for so long, I’ve learned to adapt to my limitations. I find it difficult to determine how much the illness impacts my life since my measurement of “normal” has shifted so much, so I basically ended up telling her that I’m actually doing quite well and live a relatively normal life. It was only when I was talking to my fiancé afterwards about it, that I realised it still impacts my life every day because I have to make adaptations to live. If I were healthy, I wouldn’t need to make all of these allowances in order to just go about my day to day business. I intended to tell her all of this when I called her back for the blood and urine results, but unfortunately I haven’t been well enough to go ahead with any of that.

The 4-5 weeks worth of itching really took it out with me, and then there was an incident just before Christmas where a muscle spasm landed me in A&E. I’ve been weak ever since and the holidays in general are always a stressful occasion for me. So basically, I’ve been in a flare for about two months, with the odd ‘okay’ day.

Now (as mentioned at the start) my mental health is really starting to be affected. Not just because of my physical illnesses, the pain, fatigue and insomnia that comes with all of that, but also because of the state of the world as it currently is. I’ll go into that in more detail another time though, it deserves its own post.

I am also currently at my highest ever weight. Even back when I was almost completely bedbound, I never got up to this weight. Part of that is because, back then, I had to look after myself, so if I couldn’t get out of bed, I couldn’t eat very much. But now I have a fiancé who cooks all my meals for me, so that means that I’m still eating loads of calories but not burning them off, so my weight keeps rising. I have just bought myself a treadmill, which is something that I have wanted for as long as I can remember, and I’m planning to start walking, a little bit at a time, to build up some strength and stamina, without having to go outside.

I can’t think of anything else to tell you at this point. Basically, everything is crap.

Knees Bent, Arms Stretched, Ra Ra Ra!

Knees Bent, Arms Stretched, Ra Ra Ra!

I weighed myself the other day. I knew that I put on weight since the virus thing had us all trapped in our homes, but it happened so gradually that I hadn’t realised how much I’d actually put on.

I haven’t been this heavy since I was almost completely bed-bound, which makes sense considering that the last few months I’ve just been going from bed to couch and back to bed again. I am still eating relatively well, which is probably the only reason that I’m still as healthy I am, but without daily exercise it just isn’t enough to keep the pounds off.

I’ve been thinking for a while about doing some exercise videos for people with M.E. Usually we’re just told to do Yoga or Pilates or just some gentle stretches. Yoga and Pilates are too much for my energy levels, and while stretching is all well and good, it’s not increasing my strength.

So I have in mind what I want to do and how I want to do it but, as with most of my bright ideas, the actual “doing it” part keeps being delayed. I want to be very careful and very precise about what I say and do, so I want to write a script out for it. I also don’t have much space in the house, so I need to figure that out. And we all know that nobody watches badly framed, poorly lit videos, and I really want these videos to help people so I need to make them good.

Maybe I’m just scared that whatever I produce will never meet the standards of the image I have in my mind, so it’s easier for me to just not do it…

I’ll let you know if it ever gets done.

New Normal

New Normal

A large part of keeping myself ‘healthy’ has to do with monitoring my condition on a daily basis and adjusting activity levels accordingly. A certain amount of daily activity is necessary for keeping my joints limber and my blood circulating properly. Too much activity causes P.E.M (Post Exertional Malaise) but total inactivity causes pain and O.I symptoms (Orthostatic Intolerance) so I need to find a balance between the two.

Back when the world was normal, I used to go to University and had a couple of part-time jobs. This meant that I was on my feet a lot (not a lot for a healthy person, but a lot for someone like me), used a lot of brain power, and sometimes did some heavy (not really that heavy) lifting. I was able to maintain my health while doing these things, and if I started to feel a flare coming on, I could take it a little easy (take the lift in stead of the stairs, avoid anything too strenuous, put off complicated work for another day etc).

Post Covid though, the most exercise I get in a day is going up and down the stairs to use the bathroom. I have also suffered from several flares (as mentioned in previous blogs) which may or may not be illness/diet related. Basically, I’m not sure where my baseline is any more because I’m not living a regular life. This means that I don’t know how to adjust my activity levels. Sometimes I will get a specific kind of pain in my lower legs or hip flexors (or both) that I recognise as a sign that I need to go for a walk, but other than that, I’m just guessing.

When I feel unwell I know I need to either increase or decrease my activity, but choosing the wrong one will make me feel worse. It’s not a good position to be in. I need to get some semblance of regular life back.

Fear

Fear

To listen to me read this blog post, please click here: Reading “Fear”.


It’s been a few months since I’ve posted here and that’s mostly because I’ve been well and living a normal life. Actually, I’ve been living a busy life. I’ve been finishing off my final year at university, writing my thesis, and I got two part-time jobs. I felt like I didn’t have much to say about my M.E since I was living a life basically symptom free. But then the Coronavirus hit.

Before you start reading, I want to be clear that I don’t know whether or not I had the virus, they’re not exactly handing out test kits here, all I can do is tell you what I’ve been experiencing.

It started with my legs aching. Since my “recovery” I no longer experience symptoms daily, but when I do over exert myself or drift from my diet, my legs are the first to let me know. So I shrugged it off as “I just did too much today and need to take it easier.” But the pain persisted day after day, getting worse each time. I was back on pain killers or else I wasn’t able to sleep. Then I got a cough. I’m not a person who gets coughs so I was immediately suspicious. It wasn’t a bad cough but it was persistent. I began isolating as the government suggested. The cough never got better nor worse but the leg pain continued to require pain killers. After 1 week of showing symptoms, the government said I could go back to work (this was before lockdown). The afternoon before I was due back I was massively conflicted. I could go back to work, I should go back to work and if this was the virus then I should be safe, but if it wasn’t the virus and I just had a cough then my immune system is even more damaged than usual and I’m at an even higher risk of catching it. But I’d already taken a week off to isolate, I can’t just keep taking time off just in case, can I? I went for a walk with my partner to mull things over, and I was in far worse condition than I thought. I was getting PEM symptoms almost immediately after stepping out the front door. I was panting, my heart was racing, my legs felt like lead and my whole body slouched, unable to hold itself upright.

I called work and explained my worries. They were very understanding and told me that if I felt safer at home then I should stay there. If only all employers were so empathetic. Soon after that, lockdown was put in place and although my place of work stayed open (they are working on disinfection techniques and studying the virus itself), I did not consider myself to be an essential worker (part-time lab assistant with little training to carry out work autonomously), so I am staying home indefinitely.

I don’t know how much of my symptoms was caused by the cough, by stress, by the potential virus, or by lockdown resulting in less time outside or exercising, but my condition got worse. The week after lockdown started, I woke up finding myself unable to walk. This has only happened to me a few times in the past and only when my illness was at its worst, so you can imagine how truly terrifying this was. I had to ask my partner to help me to the bathroom and back to bed. After 8 months of being symptom free, suddenly not being able to walk was soul crushing. I tried not to dwell on it but the thought stayed with me, “What if 8 months is all I get and now I go back to being ill again?” I started asking myself whether I used my time wisely or if I could have done more. I wondered if I would look back in a couple of years time and say “I should have done x, y and z while I had the chance.” But I rested and I slept and slowly, as the day went on, my strength came back a little. The next day I was able to tackle the stairs and the day after I wanted to go out for a walk.

My strength returning with rest said to me that my body is trying to get better but the lack of exercise is causing my muscles to seize up and weaken, so I should try to keep myself active within my limits. Now I’m making sure to get out for a walk every day, but I’m back to never leaving the house without my cane and a short lap around the park is the most I can manage. Every day I seem to be getting a little stronger and am less exhausted when I get home, so that tells me my hunch was right, my body needs the exercise, fresh air, sunlight, in order to stay in working order. My legs aren’t hurting so much now either but I’m still wondering if I’ll get back to full health again or if my cane is coming out of retirement permanently.

Thank God we are still allowed out of our homes but I am afraid that we may not keep this freedom, and I’m not sure what I’ll do then. I’m also afraid that lockdown will continue for longer than we are expecting and I don’t know if I will continue to improve or stay at this level of wellness. Just like everyone else right now, I’m afraid but trying not to panic.

I hope you are all well.

The Embarrassment of a Self-Inflicted Flare Up.

The Embarrassment of a Self-Inflicted Flare Up.

As I’m sure I’ve mentioned before, the key to managing an illness like this is to work out where your limits are and then live within that range. The problem is that when you get really good at doing this you start to believe that you are better. Not ‘well’ like you used to be, but better than you thought you were and more capable of doing things. If you’re anything like me, you’ll spend most of your time thinking about all the things you used to be able to do, and since I am very much like me, I began to wonder which of these things I should start doing now that I was doing better. So I started exercising.

Before my relapse in November 2016, I had begun training for a 5km run. So in my overconfident state of complacency I downloaded a Couch to 5K app. I didn’t want to run outside in case I collapsed or pushed myself too far and wasn’t able to make it home again, so I would jog on the spot in the living room. I took a rest day between each workout and I was loving all the extra calories I was burning. I felt tired but not unbearably so. Halfway through my second week however, my body retaliated.

The pain gripped my body and dug its nails in, the fatigue clung to me and dragged me to the ground. I was bed bound for a week, and house bound for another. On to week 3 and even now a short walk to the corner shop requires a long rest before and after. It’s a good thing a bought a shower stool recently so I’m still able to wash myself.

I was too ashamed to tell my partner why I was having a flare up. As a person who is always reading, learning and talking about my condition, I should have known better, but my inability to accept my disability caused him to shoulder the responsibility of my chores and my care on top of his full time job.

Shame, pain, fear and hopelessness; those are my feelings today.

Walk for M.E

Walk for M.E

I meant to post this when I finished the walk, but honestly, walking in itself was so exhausting that I haven’t got round to it until now.
BEFORE THE WALK:
It all started when I saw a post on Facebook telling me that it was M.E Awareness week from the 7th to the 13th of May, and for the first time in my life I decided to try and raise some money for a charity. I saw that Action for M.E we’re doing sponsored team walks. The families and friends of people with M.E were getting together to do a number of steps over a given period of time. I always loved to walk so this sounded like something fun that I could do. I couldn’t however, do the number of steps that everyone else was, so I took the idea and changed it so that it would be something that I was able to do. I wanted the event to be challenging so that I could call it an achievement and I decided that a 4 mile walk was what I was looking for. I set up a JustGiving page filled in the details about myself, my walk, Action for M.E and was immediately filled with fear.
I’ve never taken part in a charity event before, let alone set one up myself. I hate asking people for anything, especially money (even if it is for charity) and started to feel uncomfortable. I also don’t have the greatest track record for following through with things. Admittedly, I am getting better at this but there was still a part of me that said “this is one of those things where if you say you’re going to do it, you have to do it.” And finally, I worried about the distance. I’ve not been able to walk 4 miles since I’ve been ill. I did want to challenge myself, but I also have exams coming up and now would not be the best time for a crash. But I felt committed now, so I pushed the ‘publish’ button and shared the link to my Facebook page. I continued to share the link again and again over the next few days with statuses encouraging people to sponsor me. I also created a type of poster or leaflet that I could hand out to people or leave in places for people to find but I never had the courage to actually print those off.

A couple of weeks passed and I had a few donations, but I hadn’t heard anything from my closest friends and the people who I expected would donate. So I took a deep breath and began messaging them directly. This was incredibly uncomfortable for me and I didn’t like doing it at all but, I told myself that it was for a good cause and I wasn’t asking them for myself but on behalf of the charity. It was still very uncomfortable. But it worked, and more donations came pouring in. Before long the time for raising money had to come to an end, and it was time for me to actually do the walk.

THE WALK:
I wanted to walk in a place that was pretty and interesting so that I could take photographs along the way, so we (my partner and I) took the bus to The Wirral to walk along the waterfront. We had to take two buses to get there. The first was easy enough, a journey that I’d done a number of times, but I needed to stop in the city centre to grab a bottle of drink, some plasters and to catch the next bus. Walking through Liverpool city centre on a Saturday is an assault on the senses, and if you’re the type of person who needs more than a foot of personal space around them, as I am, you’d be out of luck. I got what I needed as quickly as possible and made my way out of there. Luckily, the next bus was ready and waiting so we jumped on thinking how fortunate we were that we didn’t have to stay in the city centre any longer. Unfortunately, we weren’t the only people heading to The Wirral that day. Somehow we managed to get on a bus with some of the loudest scouse women I’m yet to come across, and that really is saying something. And they had with them their equally loud children who were excited (and loud) about their day out. The journey was long and stressful and by the time we arrived I was already mentally exhausted. But I was there, I had a plan, and I was going to do the thing that I was there to do.
AFTER THE WALK:
When the 4 miles were finally over we stopped at a fish and chip shop. I was in absolute agony, but not where I expected. My legs hurt of course, my joints were on fire, my feet felt like they were bleeding, and my hips screamed out with every movement, but I expected all of that. Walking was what I had planned to do and walking hurts your legs. What I hadn’t expected was the pain in my back, shoulders and neck. The sheer effort that it took to hold myself upright for that amount of time, and to turn my head to look at my surroundings, had caused far more strain than I ever could have anticipated. I began to stare directly ahead as any twinge in my neck resonated down my entire spine. I kept trying to roll my shoulders back to relieve some of the tension there, but it either made it worse or did nothing at all. I kept getting sharp electric shocks down my arms that made me audibly cry out. When I was finally able to sit at the fish and chip shop I just put my head in my hands and tried very hard not to cry in public. I was trembling and dizzy and wondered to myself if this is what people feel like before they are about to pass out. There was also a child in the shop who kept screeching and it painfully rattled my eardrums and I felt the vibrations through my whole body and I winced as everything hurt again. Then the fish and chips arrived and, as I ate, I slowly began to regain some of my strength and feel like I wasn’t going to die. I almost fell asleep on the bus back and honestly don’t remember the details of the journey, I just remember getting home and thinking that I wanted to crawl into bed and never get out of it again.
POST WALK:
In the end I raised about £200 and it was an interesting exercise to see how my body would respond to such a push. Curiously, I didn’t crash the next day as I expected I would. Over the next two days I was actually able to study, take the train to uni and sit an exam. The day after that I slept for 14 hours straight and my mental capacity was null, but I still only had regular aches and pains. I wonder if there was a certain amount of adrenaline that kept me going through this time or if I rested enough after the walk that it didn’t come back to bite me. Either way I’m grateful.
Was it fun? No. Would I do it again? Probably not. Was it worth it? Definitely. Not just for the money that I raised but also because I could. There are people out there who suffer with M.E far more severely than I do, so I live by this rule that if I can do something then I should. It’s really easy to get caught up in all of the things that I can’t do, it’s times like this that I’m grateful for the things that I can.

The 3 minute something video of The Walk: