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.

Scratch for the Itch

Scratch for the Itch

Just letting you know, this post isn’t technically M.E related, but it is health related so that’s close enough.

For the last week I have been itchy from my neck to my toes. My hands and forearms also escaped so far but the longer this goes on, the more they are being effected. It’s been a week now and the itching is getting worse. I barely sleep because it wakes me up throughout.

The thing is though, there is no obvious cause. No rash or hives or dry skin. Nothing in my washing or cleaning routine has changed. It’s not a deep, burning itch, like you get with allergies, but like thousands of teeny tiny spiders crawling all over me, but scratching doesn’t kill them. Heat soothes it instead of making it itchier. I’ve not been out in the sun or under a lamp or anything. It has been a literally 24/7 itching all over my body and I have no idea why.

So I called the GP and she says “Hmmm… Let’s get some blood tests and check out your liver function and things, and then we can stop worrying.” Before she said that, I didn’t realise that we were worrying.

The closest blood clinic didn’t have an appointment available for 2 weeks, so I had to get one a little further away, and the current state of affairs means busses aren’t an option for me, so I had to walk the 40mins there and 45-50mins back (I’m tireder now).

But before that I made sure that to worry sufficiently, as the doctor had told me to do, I looked up all the things it could be. In the end I decided it was either a dormant virus rearing its ugly head (shingles for example), hypothyroidism, or some kind of cancer. I put those in order of likeliness for you too. Of course the other option is that it’s a new undiagnosable chronic illness that shows up on no tests and has no treatment, but I’m currently refusing to accept that possibility.

I’ve just come back from having my blood taken now. I asked the nurse what “liver and things” actually meant so I knew what I could rule out if the blood tests showed nothing. She confirmed that I was getting the full works. That means full blood count (red cells, white cells and platelettes), blood glucose levels, liver function, kidney function, thyroid function and calcium levels (to check heart health).

I’m supposed to get the results tomorrow and it can’t come too soon. I’m starting to get some bad bruising from the scratching that I’m doing (mostly subconsciously in my sleep). I need this itching to go away. I’ll let you know how it goes.

Tangent: I forgot my keys because I’m not sleeping and was running late for my blood test and, after the locksmith let us back in, he looked at my cane and said “What have you done to your foot, did you hurt yourself?” and I realised that’s the first time since March that I’ve had someone ask me a stupid ableist question. I was annoyed with a hint of nostalgia.

The Loss of the Familiar

The Loss of the Familiar

B.L (Before Lockdown) I was taking one of my many busses to one of my destinations. There was an elderly man sitting at the front with a walking stick. During the journey, the bus hit a bump, or halted suddenly, and he dropped his stick. Someone sat nearby immediately jumped to his assistance and returned the cane to its rightful owner.

It made me think of all of the times (and there were very many of them) when I dropped my cane. Sometimes people would help and sometimes they wouldn’t. Usually someone nearby would ask “Should I get that?” or “Do you need help with that?”. There’s nothing wrong with that, in fact I would probably prefer that they ask that just presume, that’s not the point of the story.

The point is that I saw something mundane, even inconvenient, and reflected on it with nostalgia. In that moment, I missed my cane. It had been a part of me for such a long time that, even though I was glad for the freedom, I missed having it with me. I talked about it before as being like an extra leg, a part of my being, my body, my person, so even though I was whole and didn’t need it anymore, it still felt like a part of me was missing.

It was a strange sensation and difficult to explain, I guess I’m just saying that we become comfortable with the familiar and whether that thing is a positive or negative part of us is irrelevant, we still miss it when it’s gone.

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.

Cane and Able(ility)

Cane and Able(ility)

Before I get started on this month’s post, I first wanted to mention, for those of you who can’t be bothered to read to the end, that I have started up a new Instagram account (@m.e_and_me_experience) to supplement this blog. I use it to recored my day to day experiences in picture and video form. Small, bitesized snippets can be easier to digest, especially if you suffer with brain fog, as I do. So please go and check that out.

I know I’ve mentioned in the past that I use a cane and sometimes a crutch to get around, but I don’t think I’ve ever talked about how I feel about that. So that’s what this post is all about. Some people find it difficult admitting that they need a mobility aid to walk, whereas others may like the attention that having a cane or walking stick gets them. Personally, I didn’t really think about it too much when I first started using it. My father is disabled, which is something else I know I’ve spoken about before, so he uses crutches or a wheelchair to get around, therefore, the idea wasn’t that foreign to me. When I started to realise that walking was difficult it seemed natural to use a stick to help me. At the time, I was going to college and found that, during the walk home from the bus stop after a long day, I would hold onto walls and railings in order to help balance myself and get myself home without collapsing. I felt very unstable on my feet and my legs felt so weak that I thought they would buckle under me with every step. So one day I just asked my dad if I could borrow one of his crutches to make the whole thing easier. It helped and I never questioned it. As my health improved, I decided that the crutch was very encumbersome and that I would probably get by just as well, or better, with a cane or walking stick. I found a cheap one online that I liked the look of and used it when I felt that I needed to. For a while my health was that much better that I didn’t need it at all, but I would always carry it in my bag just in case (it was foldable). It was nice knowing that it was there if I needed it. My illness progressed and I started to use it more, then I began exploring other options and opted for a cane that was sturdier and had a more comfortable hand hold. (I still have my first cane though. It has a different type of rubber foot on it now that is better suited to uneven ground and I’ve dubbed it, my “off-road” cane.) I also considered buying a walking frame with a seat but didn’t have the space for it in my flat and wasn’t sure how much I’d use it. Currently, my health is starting to get that bad that I am considering buying a wheelchair. This is something that I intend to explore during the summer when I have more time to test some out and get used to using it.

Now, I’ve explained how the decision making process came about, but I also want to get more personal about my feelings towards the cane. When I first started using it, I felt a little embarrassed, but only in the same way that one would be self-conscious about a new pair of glasses or heels that are taller than you’re used to. I was very aware of the movements that I was making with the cane and my feet and sometimes wondered how it would look from an outside perspective to see somebody so young using a cane. Sometimes I was concerned that people would think I was making a strange fashion statement. However, I was always grateful for the extra ability and independence that it gave me. I was still able to get out and about and do things, or at least more things then I would be able to do without the cane. I wouldn’t say that I loved it but I definitely had positive feelings for it. As I became more used to it and more confident using it, it became like a third leg. And that’s mostly how I think about it now, I usually forget that it’s there. The motions and movements that I make with it are second nature now so it feels as natural as walking. The only times that I really think about it is on the days when I’m not doing so well and I have to lean more heavily on it, and in those cases I’m only more aware of it because there’s more pressure on my hands and arms, I’m equally aware of the weight of my body on my legs and feet. I’ve never had a prosthetic limb but I imagine it’s a similar feeling. I don’t think of it as being separate from me even though I have no feeling in it and even though it is not physically a part of me. It feels like it’s a part of my character and it is very much a part of my identity. Without it, I feel like I am missing something.

How do I feel about my cane? How do you feel about your leg?

What’s in a Name

What’s in a Name

I’ve been thinking a lot recently about what it means to be “disabled” and whether I would/should classify myself as being so.

Although I do walk with a cane, I am able to walk without it. With it I can walk safer, faster and longer but I don’t technically need it to walk. There have also been times, when visiting a place that requires lots of standing around and looking at things (museums, art galleries, aquariums etc.), when I have requested the use of a wheelchair. Again, I could stand around and look at things, but using the chair means I have more spoons for later. I also use access lifts when my legs are tired and sit at the front of busses to reduce the chance of falling on my face.

I always defined disabled people as those who were UN-ABLE to do something “normal” without assistance. I don’t feel as though I fit into this category because although I do use assistance, I’m not reliant on it. However, I’m not as able as “normal” people so I feel I need a new definition.

I started to think about real life situations in which I might/have call(ed) myself disabled. With my friends I humourously call myself a “cripple” to excuse all of my shortcomings regardless of whether they are related to my M.E or not. When requesting a wheelchair it’s never said but a disability is implied by the cane and assumed by staff. Recently I have had to ask delivery people to be patient after ringing the doorbell as it takes me some time to get to the door. When I really thought about it, I realised that instead of classifying myself under the umbrella of “disabled”, I tend to refer to a particular aspect of my illness (I can’t walk far/stand long, I have poor balance, I get confused sometimes etc.) or I allow my cane to speak for me.

So why does all this matter? What does it all mean? Nothing really, I’m just musing over the labels that society uses and how I think of my new self.