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.

A Dream (or A Commentary)

Last night I dreamt I was on a starship. There were only about 20 people on board and we were all young, inexperienced and not particularly knowledgeable. But, we were part of a larger fleet and in constant contact with the fleet commander who had a lifetimes worth of experience and knew exactly what he was doing. Unfortunately for us, our captain, and owner of our ship, was impetuous and eager to prove herself. She attempted a maneuver that was not sanctioned by the commander. Something went wrong and we ended up warping to God-knows-where, losing all communication with our fleet.

After some time trying to regain communication and failing, the crew determines that we are actually caught in the gravitational pull of a large star. We have burned all our fuel in the warp so are unable to break free. We will be burned to death in approximately 7 years. Some time is spent trying to figure out if there is a way to stop it, but none of us really know much about space-travel or the inner workings of the ship we’re on, so people quickly give up and calmly resign themselves to their fate.

The ship we are on is huge and was built for habitation, so it contained anything and everything that you could ever want. Everybody swiftly went about making the most of their final 7 years. Some focused on learning things that they wish they knew, some busied themselves with hobbies, from gardening to crafts to fitness, some indulged in entertainment and gluttony, attempting to pack in as much care-free fun as possible. Whatever the people chose to do, they did it whole-heartedly. Not me though. I could not ignore the fact that we were headed towards our death. I began by trying to find a solution, but I knew I wasn’t smart enough and it would take me decades to learn everything I needed to know before I was even able to implement anything, so I gave up on that. I tried to do things that used to make me happy but everything now seemed frivolous and pointless. I would start things half-heartedly and then give up before I finished it. I spent many hours just sitting or lying down, staring at nothing and sighing deeply.

I envied everyone else for being able to find joy in a hopeless situation, and was simultaneously infuriated by their willing ignorance. I felt utterly alone, like I was dying a slow death while everyone else was “living their best life”.

I woke up before we reached the star, but I was left with this feeling of apathy for life.

Everything Happens for a Reason

I am a person who believes that everything happens for a reason. I have to with everything that has happened to me. If I didn’t then the universe is just cruel and unfair and what’s the point in struggling against the tide? But in stead of hopelessness, I chose to believe that, although I may not know why, and may never know why, the things that occur in my life have to happen in order for some other event to happen that creates balance in the universe. This belief brings me peace of mind and allows me to carry on trying when everything is telling me to give up.

5 years ago I went back to college to do an Access course so I could go to University. Halfway through my college course I got a very severe flu-like illness and never fully recovered. I got M.E. I was still able to complete my course (just about), but was unable to get the work experience required for the University course that I wanted to do. I was rejected from all four of my University choices and left pretty distraught. I was on the verge of giving up when my favourite University offered me a place on a different course. It wasn’t what I wanted to do, but it was close and it could lead me to what I wanted to do, so I accepted and went to University.

1 year of that course and my health had deteriorated to the point where I was almost completely bedbound. I was still managing to get the work done (and was getting good grades) but my tyrannical course leader said that if I didn’t show up for class then I would be kicked off of the course. If I was kicked off of the course then I would be kicked out of my campus accommodation, making me homeless. I somehow managed to get a meeting with the leader of another course who said he’d be delighted to take me on. I ended up loving that course and that department and they supported me with my illness so I was able to graduate this year with excellent grades.

If I had been accepted onto the course that I originally wanted to do then I wouldn’t have wasted a year on a terrible course and I would have graduated last year and been in work this year when the virus hit. And what was that course that I wanted to do? Child nursing. Yep, if I hadn’t gotten M.E, I would currently be a Nurse in the NHS right now.

Just saying… everything happens for a reason.

Fear

To listen to me read this blog post, please click here: Reading “Fear”.

It’s been a few months since I’ve posted here and that’s mostly because I’ve been well and living a normal life. Actually, I’ve been living a busy life. I’ve been finishing off my final year at university, writing my thesis, and I got two part-time jobs. I felt like I didn’t have much to say about my M.E since I was living a life basically symptom free. But then the Coronavirus hit.

Before you start reading, I want to be clear that I don’t know whether or not I had the virus, they’re not exactly handing out test kits here, all I can do is tell you what I’ve been experiencing.

It started with my legs aching. Since my “recovery” I no longer experience symptoms daily, but when I do over exert myself or drift from my diet, my legs are the first to let me know. So I shrugged it off as “I just did too much today and need to take it easier.” But the pain persisted day after day, getting worse each time. I was back on pain killers or else I wasn’t able to sleep. Then I got a cough. I’m not a person who gets coughs so I was immediately suspicious. It wasn’t a bad cough but it was persistent. I began isolating as the government suggested. The cough never got better nor worse but the leg pain continued to require pain killers. After 1 week of showing symptoms, the government said I could go back to work (this was before lockdown). The afternoon before I was due back I was massively conflicted. I could go back to work, I should go back to work and if this was the virus then I should be safe, but if it wasn’t the virus and I just had a cough then my immune system is even more damaged than usual and I’m at an even higher risk of catching it. But I’d already taken a week off to isolate, I can’t just keep taking time off just in case, can I? I went for a walk with my partner to mull things over, and I was in far worse condition than I thought. I was getting PEM symptoms almost immediately after stepping out the front door. I was panting, my heart was racing, my legs felt like lead and my whole body slouched, unable to hold itself upright.

I called work and explained my worries. They were very understanding and told me that if I felt safer at home then I should stay there. If only all employers were so empathetic. Soon after that, lockdown was put in place and although my place of work stayed open (they are working on disinfection techniques and studying the virus itself), I did not consider myself to be an essential worker (part-time lab assistant with little training to carry out work autonomously), so I am staying home indefinitely.

I don’t know how much of my symptoms was caused by the cough, by stress, by the potential virus, or by lockdown resulting in less time outside or exercising, but my condition got worse. The week after lockdown started, I woke up finding myself unable to walk. This has only happened to me a few times in the past and only when my illness was at its worst, so you can imagine how truly terrifying this was. I had to ask my partner to help me to the bathroom and back to bed. After 8 months of being symptom free, suddenly not being able to walk was soul crushing. I tried not to dwell on it but the thought stayed with me, “What if 8 months is all I get and now I go back to being ill again?” I started asking myself whether I used my time wisely or if I could have done more. I wondered if I would look back in a couple of years time and say “I should have done x, y and z while I had the chance.” But I rested and I slept and slowly, as the day went on, my strength came back a little. The next day I was able to tackle the stairs and the day after I wanted to go out for a walk.

My strength returning with rest said to me that my body is trying to get better but the lack of exercise is causing my muscles to seize up and weaken, so I should try to keep myself active within my limits. Now I’m making sure to get out for a walk every day, but I’m back to never leaving the house without my cane and a short lap around the park is the most I can manage. Every day I seem to be getting a little stronger and am less exhausted when I get home, so that tells me my hunch was right, my body needs the exercise, fresh air, sunlight, in order to stay in working order. My legs aren’t hurting so much now either but I’m still wondering if I’ll get back to full health again or if my cane is coming out of retirement permanently.

Thank God we are still allowed out of our homes but I am afraid that we may not keep this freedom, and I’m not sure what I’ll do then. I’m also afraid that lockdown will continue for longer than we are expecting and I don’t know if I will continue to improve or stay at this level of wellness. Just like everyone else right now, I’m afraid but trying not to panic.

I hope you are all well.

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.

Grant Me The Serenity To Accept The Things I Cannot Change…

…the strength to change the things I can, and the Wisdom to know the difference.

I am back at Uni for my second first year. My first first year was failed because looking after myself became more important than passing a course I didn’t enjoy doing anyway. I have been housed in a handicap accessible flat with a seat in the shower, hand rails, and a lowered hob and sink in the kitchen. I was ecstatic to discover this as it meant that looking after myself would be so much easier than it has ever been before and I could therefore put more energy into actually studying. The flat is old though and definitely needs updating, but I’m not complaining since the benefits massively outweigh any of the insignificant issues I may have.

Today was the Freshers Fair. It’s the day when all the clubs, societies, sports groups and local businesses set up stalls to try and entice students to sign up to their thing. Last year I was dealing with anxiety levels that made crowds terrifying, but I pushed myself to go anyway because I had such lofty goals for myself and wanted to sign up to all of the things. This year I remembered how much I enjoyed it last year, but forgot to consider how much my health has declined since then. This year I had to manoeuvre through the crowds with a cane. This year I found myself looking at stalls and thinking how much I’d love to do that but, knowing that I am not capable, having to walk on by. Every stall I passed made me slightly more depressed. I can’t even take part in medical research because they need “young, healthy specimens”. I went to the library to distract myself away from crying, because at least I can still read… for short periods of time at certain times of the day assuming I’m not being badly effected by ‘brain fog’. I went back afterwards to sign up for the things I had previously decided I was going to do. I joined the Biology Society to facilitate my learning (I’m studying biology), The Pagan Society for religious support (I’m a Wiccan), The Sustainability Society so that some days I may be able to work on the allotment and the Sign Language Society since I’ve always wanted to learn but never had the opportunity to do so.

I compare my past self to my current self more often than I’d like to. It depresses me because even though I know I have to accept my limitations, there is always a part of me that resents acceptance and equates it to weakness. This is particularly annoying because when I think of my current self without the comparison, acceptance comes naturally and I am excited by things like living in a specially adapted home.

So here is the daily challenge to my mental health; accepting the change that brought about my limitations and learning to live within them, identifying the things that I am still able to do and pursuing them while disregarding the voice that tells me I’m useless, and learning how to differentiate between the two effectively.

Hope and Hopelessness

I have been planning a different post for you to read, but yesterday the Great North Run was on, so I decided to give you a more emotionally driven post instead.

This time last year I was running. I couldn’t run very far or for very long but it was more than I had ever run in my life before. I got ill around March 2016 and after I’d had enough doctors appointments to know that I wasn’t going to get better any time soon, I decided that I would not let my illness control me or dictate what I could or couldn’t do. So I started an exercise regime. It was simple and easy at first, then got harder and more intense as I grew stronger and more capable. By September 2016 I was running three or four times a week around the local cricket pitch. I was heading off to my first year of University and I had plans. I was going to join the running club, swimming club and play badminton at the weekends. I had bought myself a cheap, collapsible cane just in case but didn’t think I’d actually need it. I had been walking unassisted for months, I was actually fitter then than I had been before the illness arrived.

So I went off to Uni full of hope, comfortable in the knowledge that I had taken control of my illness and I alone would decide what I would or would not do. I joined the running club and signed up for Swimfit sessions, I was playing badminton at the weekends and I felt great. Then November happened. I still cannot say whether it was because I came off of my medication, or if I had simply pushed my body too hard, but either way I succumbed to an almighty crash. My body stopped working the way it should, the way I expected it to. The furthest I could walk was to my bathroom and back, the rest of the day was spent sitting or lying down. I couldn’t even stand in the shower to wash my hair. I was taking Ibuprofen every four hours to keep the pain at manageable levels and I barely slept.

A year on and slowly but surely I have regained a decent amount of my strength and for the most part I am satisfied with my abilities. I can care for myself, go to the shop for things I need, I can study and I can even have the occasional day long outing. Relatively speaking, I am fortunate that I am able to do so much. But yesterday the Great North Run was on T.V and I am reminded of my goals and ambitions. Not only was I going to run a half and full marathon, but there were mountains I planned to climb and lakes that I was going to kayak across. I wanted to play Badminton on the University team and I was going to be a Nurse and travel abroad with Doctors Without Borders. Now my goals include being able to walk without a cane again and enjoying a whole day out without needing a days worth of bed rest to recover. These thoughts sting at the eyes and throat.

I think that staying positive can have its place. I think that seeing obstacles in life as challenges to overcome can make you a stronger person. I also think that there is a time to mourn the loss of dreams that may now never be. I have overcome much already. My past is nothing but boulders and hurdles that I have struggled over and it seems sometimes that the euphoria of having overcome your last challenge acts as a mirage, obscuring from view the minefield ahead. I think that, when the mirage fades and you can clearly see the nightmare that lies ahead, positivity is of no use. I think in a situation like this, all you can do is keeps your eyes down and place one foot in front of the other. “Plodding up the hill” my therapist used to call it. Feel sad for your perceived loss, feel sorry for yourself and your struggles, accept that life is hard and that it may be that way until you die, but keep plodding up that hill anyway.