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.

Trading Places

Trading Places

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


My partner is ill. He has shingles. He has been describing to me the kind of pain he’s been feeling, a sensitivity on the skin and shooting pains like electrical shocks through him. Everything he talks about is very familiar to me. It’s the kind of pain that I get in my legs when I’ve over-exerted myself, or I’m in a flare, or sometimes if I’ve just been wearing tight trousers or leggings all day. I told him, “That’s what I feel when my legs get twitchy.” I call it that because the ‘electric shocks’ make the muscles spasm, and my legs literally jump and twitch, sometimes even while I’m sleeping. Again, this is something he is experiencing and also describes the muscle ache that feels like you’ve been working out.

As much as I hate seeing him in pain and I want him to feel better, I feel a strange kind of validation that he now knows my pain. From this point on, when my legs start to twitch he’ll have a better, fuller understanding of what I’m feeling. He’s always been sympathetic and caring and understanding, so it’s not like this new knowing will change his behaviour towards me, but I will feel more understood all the same. Like trying to explain colours to a colour blind person. They might sort of understand what you’re getting at but they can’t know what those colours really look like without seeing them.

It’s also a strange experience being on the other side of this dynamic. Seeing his pain and understanding what it feels like. Knowing that there is nothing I can do to help. Appreciating for the first time what it’s like to see the person you love in pain and being unable to do anything about it. I wish that I could take it from him since I have more experience with this kind of pain.

In a way, it feels personal, like it’s my pain. Like the universe accidentally gave it to the wrong person and I want to be able to say “Oops, that was meant for me” and take it from him. But of course, I can’t. I just have to watch and wait and remind him to take his pills and bring him cups of tea.

I guess every now and again, a little role reversal is useful in a relationship. Being able to view a situation from the other persons perspective gives you a kind of empathy that you can’t get any other way. It might not change the way you behave but I believe that sharing that experience increases the bond between you. Therefore, as much as I hate that this is happening to him, I’m also really glad. I just hope it’s over soon.

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 Common Cold (with not so common side effects)

The Common Cold (with not so common side effects)

A few weeks ago I had a cold. Now, I was only stuffed up and coughing my lungs out for maybe 4 days, but it was a beautiful demonstration of how bad my body is at dealing with illnesses and recuperating afterward.

It is generally accepted that, unless you have a form of flu or are highly contagious and work in the food or health industry, having the common cold is not grounds for time off. I do try to live by this unwritten social law but for me even something as ‘benign’ as the common cold can greatly affect my ability to go about life normally. The fatigue that I feel is felt by my body which responds to exertion in the ‘normal’ way by increasing heart rate and oxygen intake. The problem is that it responds to minute amounts of exertion as if I’ve just gone for a run.

When your body is fighting an illness there is a huge amount of energy expenditure that happens without your awareness. There are many processes occurring within your bloodstream and your tissues to get you well again. All these processes require an extra amount of energy on top of your usual daily expenditure. In order to keep up with these demands your heart has to beat faster and your oxygen intake needs to increase.

Anyone who’s ever had a cold knows how tiring it can be. Even if you’ve had a normal day, struggling to breathe and having a higher heart rate leaves you exhausted at the end of it. For me, having a cold feels like having a cold and then going for a run. I try to live by the unwritten social law, but sometimes even I am amazed at how exhausting it can be. Sometimes I have to accept that even though I only have a cold I have to take that time off to rest.

Then comes the recovery time. Most people will find that after having a cold it may take 2 or 3 days for them to feel back to their usual selves. But my batteries don’t recharge properly and every day that I try to get back to living a normal life again (after already being forced to take 3 to 4 days off while I had the cold), takes away energy from the recovery process. Therefore, what should take 2 to 3 days actually ends up taking two to three weeks. That’s two to three weeks of doing the bare minimum, of having to prioritise what is absolutely necessary because I can’t do any more than that. This is particularly awkward and difficult at a time when assignments are due in and exams are coming up. Unfortunately, these are also the times when I am most susceptible to catching a cold since stress further disables my already underactive immune system.

There is another aspect of this though, for me personally. The illness that triggered my M.E in the beginning, was a kind of flu. So any time I get a cold I also get with it flashbacks of sleepless nights and high fevers and muscle spasms and agonising pain that eventually lead to my current state of disability. And then there’s always the background fear that maybe it will happen again and I will repeat that process of expecting to feel better but never actually recuperating and eventually having to accept that this is the way that I will feel the rest of my life. I am more afraid of that then I would normally care to admit.

I had a cold a few weeks ago but I’m starting to feel better.