Using my public platform as therapy (again)

Using my public platform as therapy (again)

I had my second jab (Pfizer) on Friday. It was fine. My arm was killing me for a day and I felt slightly more fatigued than usual, but that was all. Now I have no more excuses to stay home. After 1 year and 2 months of being almost exclusively confined to my home, I now have to re-join society.

I’ve spoken to the HR rep at work and we have agreed to a phased return (starting with 3 days a week until I feel able to do more) beginning on May 10th 2021. I am terrified.

I want to specify, I’m not afraid of the virus. I mean, I am, but only mildly. I have faith in science, in my workplace, and my colleagues to keep me safe. I think my chances of catching the virus are slim to none. What I am experiencing is a generalised anxiety that I haven’t felt for many years. It’s a fear of being away from my safe space and of facing the unknown. This is a fear that I have faced before, and has always been a part of me but, with practice, I was able to ignore it and live life anyway. But I’m very out of practice, and the idea of my home being my ‘safe space’ was intensified by the fact that people are literally dying by the million outside. So the general anxiety has become more akin to a phobia.

Problem solving time. I often talk about having two brains. I have an emotional, irrational one, that feels all the things with or without reason, and I have ‘Logic Brain’, who does all of the thinking and rationalising. When I was young, Emotional Brain was in charge of everything, and would shut up Logic Brain with “If that’s true, then why does it feel like this?”. As I grew up, I thought that the goal was rid yourself of the irrational feels by logic-ing them away (turn the light on to prove to yourself that the shadows aren’t real and can’t hurt you). Now, as a psychologically mature adult, I realise that neither brain is more right than the other and that communication between the two is key.

Therefore, the first questions are always, what are you feeling and why? The first one is pretty easy, fear and anxiety. The ‘why’ is more difficult. Logic Brain tells me that there is nothing to fear, nothing that I will encounter will harm me, and I am not in danger. But that doesn’t help, never does, never has. When I’m struggling to pinpoint the cause of my fear, I run through the scenario in my head and pay attention to which parts trigger the fear. When I think about the work, I’m actually really excited and looking forward to it. It’s what I trained to do and I love it, and even though it’ll be unfamiliar work to me, I love learning, so that’ll be fun. When I think about seeing the people, some I will have worked with before, some I will have worked with remotely but not met in person, and some will be completely new. I’m not a fan of socialising and meeting new people, but I know the atmosphere of the company is a friendly, respectful one and it will be nice to be able to mix with people who share my interests again. It turns out, the things that are scaring me are; getting to and from work, how well my health will hold up (i.e, how painful will it be?), and having nowhere to retreat to if things get too much. So let’s unpack these, shall we?

Number 1. Getting to and from work. I had planned to be driving by now but, long story short, I’m not. I used to get the bus(es) into work, but they are now at the bottom of my list, partly because lots of people in a tin box is a breeding ground for all kinds of things that can kill you, and partly because I had to get up at 4am to get to work on time, and that will negatively effect fear number 2. Currently my plan is to carpool with a fellow employee coming from the city. If they are unwell or unable to make it for some reason, then a £40 Uber is my backup plan (app downloaded and addresses saved and at the ready). It’s not ideal, but it’s a stop-gap until I’m able to drive myself, which is the official plan.

Number 2. My health is not as bad as it could be, but by no definition is it good. It won’t hinder me in doing my job, I have struggled through Uni when my health was much worse, but I am afraid of pain. I can take painkillers before, during and after work, but they only take the edge off, they don’t rid me of the pain completely. My best defence here (besides the painkillers), is to adjust my diet and adhere to it strictly, rest as much as possible when I’m not at work and, don’t be a hero, ask for a chair if there isn’t one. Experience has taught me that I will get used to the extra activity, as long as I care for myself properly.

Number 3. This is another thing that having a car would fix. Sometimes, being around people and noise and smells and places gets too much for me and I need to retreat to a confined space that is silent, where no-one can see me. Usually, this would be a bathroom stall, but I’m not sure about the safety rules that have been put in place regarding toilets in the building. This is something I will need to look into, but stairwell is also an option. Solutions to this problem require extra research, but it’s not information that is difficult to get hold of, and I can definitely prepare for this beforehand.

So there we have it. Emotional Brain has calmed down a bit because instead of telling it that there’s nothing to be scared of, Logic Brain had put plans in place to ease the fears. The anxiety is still there, but it’s less, and over time, with repeat exposure and further developments, it’ll become pea sized and manageable again.

Thanks for helping me with my therapy today. I hope you’re all well. :smiley face emoji:

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.

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.

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.

You Don’t Have to do Anything

You Don’t Have to do Anything

In this Covid-19 pandemic that we are all currently living in, there seems to have arisen a new social pressure to be productive and achieve. There’s a lot of emphasis of what new skills you will have acquired once the lockdown is lifted. What renovations you will have made to your life and your home. I have seen and heard many people say something similar to “You finally have the time to do all of those things you always said you never had the time for”, and while this may be essentially true, there is no reason why you should now be obligated to do those things.

The thing that these people are overlooking, is that this situation is unprecedented for most of us, and that what we are actually living through a massive shared trauma. For these people, their go-to coping mechanism is to keep busy so that they don’t have to sit with, and acknowledge their feelings about what is going on around them. These people will likely find that eventually they will run out of things to keep themselves busy, or that their thoughts will overpower their actions so that their ‘keeping busy’ tasks are no longer able to distract them. These people are often in denial about their true feelings, and their underlying insecurity requires them to validate their avoidance coping mechanism by shaming others into doing the same things as them.

A common feeling that is shared by many of us right now, is one of helplessness or uselessness. There is nothing we can do and nothing that can be done for us. We have no control over the virus or how our governments choose to react to it. Sometimes, these feelings can bleed into our other activities and soon we find ourselves thinking, what’s the point in doing anything if there’s nothing we can do. This apathy can quickly spiral into depression where we find ourselves wanting to do something but feeling too miserable and down-trodden to act on it. This then circles back to our original feelings of helplessness and uselessness.

Anybody who has suffered with depression before will recognise this kind of cycle, and if you’ve been lucky enough to get help, you’ll have your own coping mechanisms to dig your way out or to manage your feelings. But for a lot of people, this will be a new sensation.

For people who have never had to deal with this kind of depression and isolation, it can be terrifying not knowing what to do. Desperate to connect with people and know that they are not alone, these people go to social media where they are bombarded with all of the things that the “productive” people are accomplishing. They are asked “What have you been up to?” “What have you done?” and suddenly they feel like they have to justify themselves and defend their lack of activity. This will send them down one of two paths. Either they will force themselves to be productive, even though their heart isn’t in it, or the feelings of shame will confirm for them that there is something wrong with them and that they are lazy, useless and wasting precious time etc.

The first outcome will lead to frustration, exhaustion, possibly anger, and no task attempted will be given full attention or dedication and so won’t live up to the standards that the person is now expecting of themselves. This will eventually lead them to thoughts such as “I can’t do anything right even when I try” and a return to depression. The second option reduces self-worth and increases anxiety and depression as well as isolating them further by making them believe that they are the only people feeling this way. These feelings could easily lead to self-neglect or self-harm very quickly.

Depression is not an easy thing to overcome, especially if it’s your first time fighting with the beast, and I’m not going to pretend that I have an answer for you on how to break out of the cycle I described earlier. Honestly, the reason I’m talking about it in the first place is because I am stuck in it myself. But from my experience and knowledge I can present to you these thoughts and observations. I hope that when you read them, you believe them and that they can bring you at least a little relief if not show you the path out.

  • Processing trauma takes time and energy and is a different process for all of us.
  • This is something that has never happened to us before so there is no correct or incorrect way of dealing with it.
  • Just because a lot of people are doing something, does not mean that you should be doing it too or that it is the right thing to do.
  •  Acknowledging your feelings is the first step to accepting them.
  • You are the authority on yourself. Trust yourself, believe in yourself, focus on yourself. Don’t worry about anyone else. Their opinions can’t hurt you.
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.