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

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.

Change

It’s been a while since I’ve posted. Uni has been demanding and I need to allocate my spoons intelligently.

Today I just wanted to talk about how my pain has changed over the past few months. I was always very descriptive about where my pain was and exactly how it felt (the benefits of being a writer), so I can compare what I feel today to what I felt before.

The pain I feel now is in the joints, or rather in the creases and folds of skin and muscle where the joints are. It is particularly obvious in the place where my femur attaches to the pelvis. But as I said, it’s not in the bone or the joint itself, neither does it feel like a muscular type of pain. Imagine that you are laying on your back with your knees up and you have a heavy barbell laying across your pelvis at the point where your abdomen stops and your legs begin, right in that crevice. Imagine this incredibly heavy barbell has been laying in that one position for a long time and you want to straighten your legs in the hopes that it will relieve some of the pressure, but when you try to do this, you find another barbell beneath you. This one sit exactly opposite the first, right at the top of your leg, just below your butt-cheeks. So you lift your knees to avoid the barbell on the floor but in doing so you increase the pressure of the one on top of you. So you try to lower your knees again but find that the one beneath you digs into you because of the weight of your body plus the barbell on top, and it causes painful pressure in that crevice. This is the pain I feel laying down, sitting or standing. Different leg positions vary the intensity of pain in different areas but the pain and discomfort is always there.

This is the strongest pain I feel but not the only one. The other pains are lower and feel more like ligament pain. They begin about midway down the fibular and curl around the ankle. It feels as though the ligament is tight and tightening every second. The way to reduce this tightening pain is to stretch and flex the foot, but as soon as it’s stationary the tightening begins again. This results in a constant movement of the foot to avoid the ligament pain in the leg and ankle which in turn causes a muscular fatigue and pain in the leg and ankle.

My flare up wasn’t so bad this time around so the pain was mostly in my lower body with only aches in my back and shoulders. But this change in the type of pain I feel makes me wonder if the illness is progressing, changing or if it’s actually something else altogether. It’s times like this I wish I was in contact with a specialist, I don’t imagine my GP can give me any more detailed answers than Dr. Internet.

Not Enough ‘Suffering’ to be a ‘Sufferer’.

I am a writer. Not professionally or anything, but it’s my preferred medium of self-expression and creative outlet. So, once I’d come to terms with the fact that I was living with a chronic illness, it seemed obvious that I should write about it. I went back and forth on the idea of blogging about my experience. There are pro’s and con’s to any balanced argument, but the thing that held me back the most was the feeling of lacking the authority to talk about this illness publicly. Let me explain:

Myalgic Encephalomyelitis does not have a definitive diagnostic test, it is a diagnosis of exclusion. It takes a long time and a huge number of tests to rule out what it isn’t before doctors will come to the conclusion that it’s probably that. Therefore I cannot say definitively that this is the illness that I have. Also the list of symptoms that are associated with M.E may not all be present and can also overlap with other illnesses (Fibromyalgia, Lupus, Lyme Disease etc.), and these illnesses may also lack a diagnostic test or they may have an inaccurate test that gives off a number of false negatives. To add to the confusion, some people may have more than one of these illnesses at a time or may have an obscure or rare manifestation of the illness(es).

Secondly, M.E effects every individual differently, firstly in which symptoms a sufferer may or may not exhibit, and also in the severity of their symptoms. It should also be noted that severity of symptoms can increase or decrease from day to day depending on a wide number of variables. The severity of the illness can also be changed over time through medications, therapies and lifestyle changes. The M.E Association has a Disability Rating Scale which briefly outlines the capabilities of sufferers at different levels of symptom severity. I would consider myself to be in the ‘moderate to mildly affected’ section of this scale, being at 20-30% disabled. On a bad day, or if I’ve had several bad days in a row, I could be considered to be up to 60% disabled, but only on extremely rare occasions have I been worse off than that.

To consolidate and sum up, reason number one for my lack of authority on this subject; I don’t know for sure that M.E is even the illness that I have. Reason number two; I am a ‘mild to moderate’ sufferer, meaning that I don’t know what it’s like to be really disabled by this illness.

But as you see, here I am starting this blog about being an M.E sufferer. So I must have reconciled these arguments against such a thing. This is how I intend to over come these issues; with a disclaimer. This blog shall be a sharing of personal experience living with a chronic illness that, for the sake of understanding and categorisation, I shall refer to as Myalgic Encephalomyelitis (or M.E). I am not a professional on this illness and therefore nothing I say should be taken as medical knowledge or advice (unless followed up by a source, in which case it’s your responsibility to follow up and decide whether or not that source is reliable).

Now I am free to share my experiences, opinions, stories and emotional journey without feeling the responsibility of being an authority on all things M.E. Now I can breathe, relax and write with ease. I hope I can be a source of entertainment, comfort and/or comradeship for everyone that reads my words.