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.

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?

Anger

I have been angry recently. The anger comes and goes, just like the other emotions I feel, but I’ve been feeling angry for the past few weeks now and I don’t think it’s going away any time soon. I’m angry about the things that my body won’t allow me to do and I’m angry at the unwanted things that it does do. I usually use humour to make my disability easier (for myself and others) to deal with but I’ve found that by doing this I have made it so that the people around me don’t fully understand the difficulties that I live with. This then means that when the anger rears its ugly head, I end up getting frustrated and irritated and sometimes even aggressive towards people who laugh at me in the way that I would normally laugh at myself. Of course they can’t be blamed for laughing at me this way since I’ve already established it as an acceptable behaviour by doing it myself. But the point here is not that I feel victimised because I’m being laughed at, it’s just that the laughter implies that it’s not a vicious all consuming disease that is slowly stealing my life away from me.

I find myself in situations where I have to remind people that my life isn’t the same as theirs and that there are things that I cannot do, and that repetition just drives it home a lot harder and a lot more frequently than is comfortable. It also reminds me of my teen years when I suffered severely from depression and anxiety and therefore couldn’t work and rarely went out. People would call me lazy because they couldn’t see the illness that I was suffering with. This feels very much like that, like people can’t understand why I don’t do certain things because they can’t see the way that I feel and I’ve taught them to laugh at the illness as if it’s something that doesn’t affect me.

Only yesterday I was talking to a friend and fellow student about future career prospects. She said that she didn’t want an office job because she didn’t want to be cooped up and sat down all day, and I replied that I didn’t have much of a choice anymore. She asked why.

Last week I was talking to my partner about how I wanted to restrict our future children’s exposure to technology. I wanted them to have an old-fashioned childhood where they played outside instead of sitting on their consoles or tablets or phones all day. “Says the person who sits around on her phone all day” he laughed. I wanted to scream at him. Do you know how much I would love to go for a bike ride or camping or tree climbing or a long walk or play at the beach or go and feed the ducks or even just have a day out where I don’t have to plan everything in advance because I need to know where and when I can sit down and what the terrain will be like and how long I’m going to be on my feet and how far away things are and what time of day we’re going to be out and what the weather and temperature will be and if we’re able to come home quickly and what else needs to be done that day and how many people are going to be there and what’s expected of me while I’m there and how much enthusiasm will I need to put in. I ‘sit around on my phone all day’ because that takes little to no energy and after a 10 to 12 hour week that’s about all I have left.

So yeah, I’m angry. I’m angry because of all the things that I wanted to do with my life that I now seem unable to do, and I’m angry that people look at me and see me as lazy, and that no one seems to notice how hard I work just do as much as I do do. I’m angry because when I do take the time I need to rest, I feel like I’m letting myself and everyone around me down. I’m angry because life is hard every single day and I am alone in this fight.