The Miracle of Science

The Miracle of Science

On March 21st bought my first wheelchair because walking is getting harder and I knew that my 3rd year of University would be more challenging than the previous two so I might need some extra help getting around. Exactly 4 months later, on July 21st, I went for a walk, for the first time since I got sick, without my cane. Today I am going to tell you about my miraculous recovery.

Over the past two weeks I’ve been doing something incredible for my own personal development and also for my future career prospects; I did two weeks of work experience at a biological laboratory. The shifts were 8:30 a.m. until 5 p.m. and I was on my feet most of every day. The Laboratory was based in the next county over so I had to take two buses to get there, meaning that I woke up at 5 a.m. and often didn’t get home until 7:30 to 8 p.m. On the Saturday between the two weeks I also volunteered at my university as a tour guide from 9 a.m. until 3 p.m. standing, walking, talking, and going up and down stairs. If you had asked me back in March if I thought I’d be able to do such a thing, I would have laughed to hide my tears. “I really wish I could,” I would have said “but it’s just not possible.”

This past week I have been able to stand in the shower while I wash my hair and shave my legs, and then dry and dress myself without having to sit down. I have skipped across a car park, run up the stairs, and chased my partner around the room in a play fight.

Don’t get me wrong, I’m in no way “healed” or “cured”, I’m not even back to how I was before I got sick in the first place. I still have to pay very close attention to my body when it gives me those signs and signals to say “you’re near your limit. You’ll flare if you keep pushing.” But, I’m slowly starting to to be myself again.

So how did I do it? Firstly, let’s not underestimate my constant self analysis. I learned about my illness not just through internet searches, community engagement and books, but also through constantly listening to my body and watching how it reacted to certain stimuli. So I knew my limitations well and I could sense when my body had had enough. I knew when I could push harder and when I needed to slow down and rest so the only times I would have a bad flare was when I had to do something unavoidable or I got sick and my body put all its energy into fighting that. This is something that all chronic illness sufferers should do, especially when they have an illness that doctors know little about and there is little treatment for. Know yourself, your body, your illness and advocate for yourself, do what you know is best for you. Once you’ve reached this point, then you can start experimenting with treatments because you’ll be able to feel whether it’s helping or hurting you more. The one that helped me is Dr Sarah Myhill’s Keto Paleo protocol. I’m not going to go into great detail about it here because I have done so elsewhere and also she will explain it better than I can so if you’re interested you should check out her website. I will also insert my video here so you can watch me explain it poorly. Again, the important thing here is that you know what should happen during this process and that you know you’re body well enough to know whether what you’re feeling is expected or something to worry about.

It took about 6-8 weeks for me to start feeling a change. I began to increase my activity slowly and carefully taking a step back if I needed to. But when I first started calling it a success was when I was tired then rested then felt refreshed. This was something my body never did, I used to wake up exhausted but now I was starting to feel like my body was recovering while it slept like it should.

My diet and lifestyle is something I have to stay on top of and if I let it slide too much I start to feel the old fatigue and pain start coming back, but living this way has given my life back so I am happy and willing to do it for the rest of my days.

Cane and Able(ility)

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?

Livin’ on a Prayer

Livin’ on a Prayer

Firstly, apologies to my followers who have had to wait twice as long for this post. I was awaiting some good news to share with you all (for a change), but unfortunately that news hasn’t come yet. So, I’ll talk today about university in stead.

I’ve just finished my second week back and although I love being a student and have enjoyed my classes, I’m still terrified that this pace is not sustainable. This past week has been a particularly stressful one and I feel as though a crash is inevitable, it’s just a question of when.

I attend university three days a week. Two of those days are half days (9-1 or 11-3) but the last day is a full 9am-6pm. Over the summer I also moved home so I no longer live on campus and have a 2 to 2 and a half hour commute each way, depending on traffic. This means that every Friday I have to get up at 5am and I don’t get home until past 8pm. My days are spread out across the week, Monday, Wednesday and Friday, but second year expects much more from us than first year did, so even on my days off, I feel like I’m not able to fully rest since I have studying to do, not to mention the few household chores I can do and keeping on top of my general health and hygiene.

I’ve also recently begun to worry about what I’m going to do once I finish my course. I won’t be able to hold down a full time job, but who ever heard of a part-time graduate position? Sure, if I already had a job I could negotiate a reduction in hours but how am I supposed to go into the job market at the same time as the rest of the UK’s graduates and convince a company that they should take me on even though I can only do half the work of their other candidates? And the kind of work I want to do is not the kind I can do from home. I mean, there’s always paperwork to be done and I could probably take that home with me, but lab work needs to be done in a lab, under carefully controlled conditions.

So in conclusion, I am stressed. I don’t know if I’ll make it through uni and even if I do, my career prospects look bleak. I feel as though the best I can do is just keep plowing ahead and hope that I find some treatment that allows me to live a half-way normal life.