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.

New Normal

A large part of keeping myself ‘healthy’ has to do with monitoring my condition on a daily basis and adjusting activity levels accordingly. A certain amount of daily activity is necessary for keeping my joints limber and my blood circulating properly. Too much activity causes P.E.M (Post Exertional Malaise) but total inactivity causes pain and O.I symptoms (Orthostatic Intolerance) so I need to find a balance between the two.

Back when the world was normal, I used to go to University and had a couple of part-time jobs. This meant that I was on my feet a lot (not a lot for a healthy person, but a lot for someone like me), used a lot of brain power, and sometimes did some heavy (not really that heavy) lifting. I was able to maintain my health while doing these things, and if I started to feel a flare coming on, I could take it a little easy (take the lift in stead of the stairs, avoid anything too strenuous, put off complicated work for another day etc).

Post Covid though, the most exercise I get in a day is going up and down the stairs to use the bathroom. I have also suffered from several flares (as mentioned in previous blogs) which may or may not be illness/diet related. Basically, I’m not sure where my baseline is any more because I’m not living a regular life. This means that I don’t know how to adjust my activity levels. Sometimes I will get a specific kind of pain in my lower legs or hip flexors (or both) that I recognise as a sign that I need to go for a walk, but other than that, I’m just guessing.

When I feel unwell I know I need to either increase or decrease my activity, but choosing the wrong one will make me feel worse. It’s not a good position to be in. I need to get some semblance of regular life back.

The Here and Now: An Update

Once more a little more than a month has passed since my last blog post. The main reason for this is simply that although many things have happened nothing big and important enough to blog about has happened. Therefore, this blog post will be a basic update of my life over the past month and a bit.

Rollin’ Rollin’ Rollin’
Since the last post was about my cane, it seems appropriate that I begin with the news of my wheelchair. Every now and then, and far more often than I’d like, I have days where I need to do something but physically cannot. I’ve been thinking recently about getting a wheelchair and I know I’ve mentioned it on here before as well. Recently I had one of these days and it upset me more than usual. So the next day my partner and my crutches helped me to walk a few feet up the road to Ableworld where I’d spotted a wheelchair that I liked previously. I wanted to try it on a bad day to make sure that I’d still be able to use it, and I could. So we bought it and that weekend we took it bowling. I had a little trouble getting on and off of the bus, and I felt horribly embarrassed by that, but I’m happy to know that the chair is there if I need it, so hopefully I won’t have any more of those days where I have to decide whether I’m going to do what I need to do or what I have to do.

Not a diet, a lifestyle change
I have heard a number of chronic illness patients swear that a clean, low carb diet has helped to improve their symptoms. I’m not just talking about M.E here, but a whole variety of chronic conditions from pain and fatigue to migraines and allergies and, of course, digestive problems. A few of that number talked about a book by Dr Sarah Myhill. She believes (as do many scientists at this moment in time) the symptoms of M.E and Fibromialgia are caused by a lack of normally functioning mitochondria in the cells. Without going into too much scientific jargon, the mitochondria are what give our cells energy and if they can’t do that effectively, or if there aren’t enough of them, we are left without enough energy to function correctly. This explains the array of M.E symptoms including not just fatigue but brain fog and a faulty immune system as well as others. She suggests that by eating a keto-paleo diet we can help our bodies utilise the energy we get from our food more effectively. Combining this with proper pacing techniques so that we don’t waste the energy we do have, and supplementing with vitamins and minerals known to aid cell metabolism, we can gain back a percentage of our functionality. Of course, where you start will effect where you can go, she never promises a full recovery, and it is a life-long regime, but considering how many times I’ve heard it works, and the sound science behind it, it’s definitely worth a shot. I’ll leave a link to her website here if anyone wants to learn more: CFS The Central Cause: Mitochondrial Failure
So far (it’s been about 4 weeks) I’ve not noticed much difference in my fatigue, only an improvement in my digestion, but I’ve not been taking my supplements or tracking my carbs so although I have, for sure, drastically reduced my carb intake, I don’t think I’ve entered ketosis.

What’s in your head?
I’ve started seeing a new counsellor with Talk Liverpool, the lady I was seeing at Compass did not work out at all. I really tried to make it work with her, but every session I went in looking for answers and all I got was patronising sympathy. Basically, I would go in and say “this is really hard for me” and she’d respond “wow, that sounds really hard.” It wasn’t beneficial at all. The new woman I’m seeing, Claire, is much better trained. She knows how to listen, empathize, and reflect my thoughts back to me in a way that makes me dig deeper. I’ve just come back from my seventh session and I really feel like we’re getting to the crux of my problems. I am very optimistic.

A new addition
We got a cat! I know a number of chronically ill people take great comfort in their pets. They say that animals can sense when you are unwell or upset and they find a unique way of confident you. However, our new cat, at 2 years old, is still a kitten. As much as I love him and he can make me laugh, he’s more needy than I am. He requires a lot of attention and having him around the house is almost like having a toddler. He gets into everything, he destroys anything that isn’t nailed down, he’s constantly under our feet, and he cries for your attention all the time. I wouldn’t give him up for anything, but he really does try my patience sometimes. So much for a therapy cat.

Two down, one to go
My second year of uni is drawing to a close. It’s been demanding but enjoyable. I’m becoming quite apprehensive about the coming summer. In order to gain employment after I graduate, I need to have real world experience. I planned to get this experience over the summer months but I’ve been trying to contact places since before Christmas and still don’t have anything in place. As a chronically ill person, I know that employers will be hesitant to take me on, so I know I need to have something really special to be considered ‘worth the risk.’ Without any kind of experience, going into the job market is going to be disastrous for me. There are people at uni who can help me with this, but at the moment,  time, revision, and a little bit of pride, are getting in the way of me asking for help.

There’s probably some bits and pieces that I’m forgetting but for the most part you can now consider yourselves updated. I hope to bring you some more meaningful posts soon.