How Are You?

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.

Feelin’ Hot Hot Hot

Feelin’ Hot Hot Hot

People with M.E struggle to regulate their temperature. This could be due to a number of reasons, and more research is needed to pin point exactly why this happens, but it is likely to do with disruptions in the nervous system. We don’t only feel too warm or too cold, but our bodies physically respond in an exaggerated manner too as it struggles to regain homeostasis. Some people react more to cold than heat, or vice versa, and some are equally effected by both.

I am effected extremely by the cold. My hairs stand up on end, I shiver uncontrollably, my limbs get stiff and my dexterity disappears as the blood in my body abandons the extremities in order to keep my vital organs warm. Raynaud’s is commonly reported by M.E sufferers and, although I’ve never been so bad as to have numbing or pins and needles, my nails will sometimes turn purple and my fingers will go white. I do generally have poor circulation in my hands and feet anyway, which doesn’t help the situation, but when I get cold cold, they turn to ice. It can also take hours, or sometimes the whole day for me to warm up. I’ll often say “the cold is in my bones” because it feels that no matter how much I wrap up warm and sit directly in front of a fire, the cold is so deep that I can’t rid myself of it.

The “interesting” part of my bodies faulty thermoregulation is that, because it feels the cold so extremely and tries so hard to warm me up, that it often over-shoots. Meaning that I’ll be freezing cold all day, then suddenly boiling hot for 30 mins; sweating, red face, blood pounding in my eardrums etc., then freezing cold again as my body tries to correct itself and overshoots the other way.

Left: October 2019, Liverpool, UK Right: February 2019 Liverpool, UK

It’s a running joke among people who know me that I’m always cold. To see my bare arms is rare, and to see my bare legs is like seeing a unicorn. So you’d think that in hot weather, when everybody else is melting into a pool a sweat, I’d be comfortably warm, right? Oh if only my body followed the rules of logic.

The problem with my body is not that it always feels cold, it’s that it cannot regulate its internal temperature. It just so happen that I live in a country with a generally cool climate, and therefore, frequently feel cold. However, once a year (or sometimes twice, months apart) the UK has a heat wave. When this happens, my body doesn’t know how to react and basically just self-destructs.

The last few days I have been dizzy, nauseous, breathless, breaking out with heat rash and bumps, had muscle cramps, indigestion, headaches, and been periodically shivering. When I asked the M.E community if they had similar symptoms when it gets hot, it was suggested to me that I might have PoTS, which is a common co-morbidity of M.E. This is something I have considered before, but my recent symptoms are not triggered by standing, nor does my heart rate seem to be any different from usual (besides the expected increase that occurs when I get breathless). One person suggested it could be low blood pressure exacerbated by dehydration. This seems much more likely since I’m bad at staying hydrated as it is, and I especially forget to increase my fluid uptake during heat waves, but I have no way of measuring my blood pressure at home, and am still not comfortable leaving the house. Yesterday I had some pins and needles in my finger tips so it might be worth buying a blood pressure machine to make sure I’m not in any real danger while I try and hydrate myself.

Anyway, all of this was just to say, “Eurgh, heat.”

New Normal

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.

Are You Lonesome Tonight?

Are You Lonesome Tonight?

A few days ago I signed up for a study by Bournemouth University that was asking M.E sufferers, who are familiar (to say the least) with social isolation, how the lockdown version differs.

I believe I have a unique perspective on this. I have, in the past, been so unwell that I have been almost bed bound and certainly housebound, and have been weeks without seeing or speaking to another human being. But that wasn’t the position I was in when lockdown started.

First, let me tell you about my experiences of social isolation. Having suffered with depression, anxiety, and PTSD, it has been normal for me to isolate, even before I had to. After working hard on myself and my issues, I still chose to “isolate”, although I wouldn’t call it that. Once I had gotten to a place in my life where I knew who I was and I liked myself, I found that I enjoyed my own company but, very often, other people irritated me. I had some friends and would spend time with them, but was always relieved when I could go home and be by myself again. I went off to college and I liked my college friends very much, but no matter how much they asked, I wouldn’t go to the pub with them after class, I wanted to be alone where I could relax. I preferred my own company to that of others.

The difference with having M.E is that the isolation is not a choice you are making, you are unable to go out and socialise. You begin to realise that commenting on the weather to someone at the bus stop, or saying “Thank you” to a cashier, are social interactions that you took for granted. “Are you in the queue?”, “Is this seat saved?” and “Excuse me, you dropped something” are all moments, no matter how brief, that connect you to another person. When you can’t leave the house, it feels as though a basic human right has been taken from you. You begin to wonder if you’ll be forgotten and just fade away from the world. I think this is how people who live alone may be feeling during lockdown.

I tried, as I’m sure many people have now, to form connections on the internet. I joined support groups on social media, I started an Instagram page, and began blogging, but something that people often forget is that socialising, talking on the phone, writing, reading, even looking at a computer or television screen uses energy and can therefore be exhausting for people with M.E. I know I often couldn’t manage more than maybe an hour of social media at a time without having to take a four hour rest afterwards. Some people with M.E (including me at the time) can also be light and sound sensitive, and get sensory overload as well. This means that seeing and hearing in any capacity becomes painful and sometimes, I would spend hours or even days in a dark room not doing anything except taking my pain killers every two hours. This is a whole different level of isolation that most are not experiencing right now. When it’s just you and your pain, hopelessness very quickly sets in and it’s not unusual to wish death upon yourself as it feels like the only method of escape.

But as I said above, this is not where I was when lockdown started. For me, personally, lockdown was a whole other kind of devastating. I’m sure I’ve touched on these topics before in previous posts, but will reiterate for those who don’t follow my blog. Over the past year and a half or so, I have been researching and experimenting and working on getting better (with the help of my partner). I have been self-monitoring (heart rate, pain levels, other symptoms etc.), pacing, switched to a keto diet (monitored my ketone levels, macro intake, and weight regularly), employed G.E.T (Graded Exercise Therapy), and very slowly got to a point where I was well enough to walk without my cane, learn how to drive, work through my final year at university and get 2 part-time jobs. I was ready to graduate with excellent grades then go straight into a well paid, progressive career. I was right on the brink of achieving what I’d been working towards for the past 5 years, and I was so ready to start my new life, when the virus hit. My graduation was taken away, I never passed my driving test, and because I am immunocompromised, I could no longer work and barely left the house. Even opening the door to the delivery guy, I feel like I’m putting my life at risk. My health began to decline as I was unable to continue my exercise regime, certain foods became difficult or expensive to obtain, and stress triggered flare-ups. Sometimes it feels as though I’m always fighting and can never catch a break, but more on that in the next post.

I am luckier than others in that, I live with my fiancé, who is also home with me all day, his parents drop round to bring us food and make sure we’re okay (from a safe distance), I have a best friend who’s always on the other end of the phone, and I am still well enough that I can use the internet comfortably for many hours on end. I have felt grief for the life that slipped through my fingers, fear of the virus and what that could mean for my fiancé’s and health and mine, frustration at not having access to things that had become part of daily life, and irritation at how the country is managing the situation. Maybe it’s because my current situation has me surrounded by people, maybe it’s because I’ve learned that being alone isn’t necessarily bad, maybe it’s because I know what true loneliness feels like, or perhaps it’s a combination of all these things, but I have not yet felt isolated, I have not yet felt lonely.

Everything Happens for a Reason

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.

The Loss of the Familiar

The Loss of the Familiar

B.L (Before Lockdown) I was taking one of my many busses to one of my destinations. There was an elderly man sitting at the front with a walking stick. During the journey, the bus hit a bump, or halted suddenly, and he dropped his stick. Someone sat nearby immediately jumped to his assistance and returned the cane to its rightful owner.

It made me think of all of the times (and there were very many of them) when I dropped my cane. Sometimes people would help and sometimes they wouldn’t. Usually someone nearby would ask “Should I get that?” or “Do you need help with that?”. There’s nothing wrong with that, in fact I would probably prefer that they ask that just presume, that’s not the point of the story.

The point is that I saw something mundane, even inconvenient, and reflected on it with nostalgia. In that moment, I missed my cane. It had been a part of me for such a long time that, even though I was glad for the freedom, I missed having it with me. I talked about it before as being like an extra leg, a part of my being, my body, my person, so even though I was whole and didn’t need it anymore, it still felt like a part of me was missing.

It was a strange sensation and difficult to explain, I guess I’m just saying that we become comfortable with the familiar and whether that thing is a positive or negative part of us is irrelevant, we still miss it when it’s gone.

Fear

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.

The Here and Now: An Update

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.