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.

G.P, M.E, O.M.G

I’m currently working on a longer post about mental health but I’m aware that another two months have gone by since I posted so thought I’d do a quick one to keep you readers interested.

Last time I began by mentioning that I was waiting on some good news. That news never came.

During my summer break I decided it could be beneficial to be under the care of an M.E specialist, and it just so happened that there was one at the hospital down the road from where I’d just moved to. Of course you can’t just walk in and see a specialist, there are tick boxes and hoops that must be jumped through, so off I went to my G.P to find out what exactly I needed to do, and begin doing it. In order to be diagnosed with M.E you basically have to test negative for everything else it could be, which requires a lot of testing.

I’m going to level here with you right now; I have never officially been diagnosed with M.E. I have been negative for a whole lot of tests (which I’ll go into another time) but over the past few years I’ve moved around a lot and each time I moved I got a new G.P who wanted to do their own round of tests, so I never got as far as an official diagnosis. This was one if the reasons I wanted to see the specialist. I don’t currently claim any kind of disability benefit but should it come to that, I figured the whole process would be easier with an “official” chronic illness given to me by a knowledgeable professional.

Anyway as I was saying, to get to see the specialist my G.P started me off with blood tests. They came back (as they always do) with a vitamin D deficiency and I was prescribed supplements. 2 weeks to get my levels back to normal, 1 week to schedule a new blood test and 1 more week to get the results back. So I called to ask if there was anything to do in the meantime. She began to explain how not having enough vitamin D can make you feel drained when I interrupted her. This was not my first rodeo. My vitamin D levels had been lower than they were this time round and I had felt better. She believed me and decided to call the specialist to see what tick boxes and hoops they had for me. By the time she got back to me to say they needed a non-routine blood test, I’d already been back for my vit D revision. So back I went again for blood test number 3. Results were normal so my G.P begins filling out the referral paperwork. By this point I’m about to start uni again. It seems like not much has happened but each step took at least a week, sometimes two, and I had to be the one to keep calling and arrange things. Some time goes by and I don’t get a call or letter like my G.P said I would so I call to ask what’s happened to my referral. She calls them and tells me that something went wrong and she has to resubmit the referral. More time passes and no word. I call again. This time it’s in the wrong format and has to be submitted a third time. More time passes and still no word. Uni is pressing down on me and I’m exhausted all the time. I don’t have the energy to keep chasing, so I stop.

During this process I spoke to some others in my support group who had been to the hospital I was trying to be seen at. Mostly they said it was a waste of time and energy. The doctors apparently knew less than the patients, recommended outdated and potentially dangerous treatments, and generally didn’t listen to or believe in what the patients were telling them. So all in all, the benefits seemed to be outweighed by the costs.

I still haven’t heard anything from my G.P or any other doctor. Maybe I’ll try and persue it again when I find some more free time, but for now it doesn’t seem worth it.