I am currently experiencing a relapse, and it sucks. After two years of health improvements, about two months ago, my health took a nosedive. To be honest with you I am having a hard time dealing with this. Life was much easier when I was healthier, and now I have to face that it is getting harder again. So, it is time to get vulnerable, let’s talk about it!
It Took a While to Realise
I often say that I am aware of my body and energy levels. But sometimes, endless optimism allows me to ignore the reality of my illness. Because of this, it took me some time between starting to relapse and actually admitting to myself that I am. It took a little longer to start reorganising my life in a more relapse-friendly way.
About two months ago, on exactly February 29th (not that I am counting!), I came down with a very intense flu. For the next month, I kept telling myself, “Well, you’ve only just been sick. It is normal to be a bit knocked out by it”. But whilst saying that to myself, I would dose up on painkillers and push through feeling ill. The worst thing to do when you have ME.
But suddenly, a couple of weeks ago, I noticed that I constantly felt so much worse than I had in the last year and that it was time to stop pretending and pushing myself. It was time to cut down my workload.
Cancelling is Hard
The great thing about having had some relative health is that I had built up a life I really enjoyed. I was performing stand-up comedy regularly, participating in workshops, hanging out with friends, and working (part-time). I was even learning to become a walking tour guide.
All of a sudden I realised that I couldn’t keep up with all of this. So it came down to cancelling and prioritising, which is really hard. Especially when the things I want to give up are the things I need to keep being able to afford groceries. The things I most want to prioritise do not pay and are the most taxing in energy. But alas, that is life! So, gradually over a couple of weeks, I sent messages to cancel or pull out of my responsibilities.
This is obviously a heartbreaking thing to have to do when the reason is out of your control. It is particularly difficult when, as happens with a chronic illness that has regular periods of fluctuation, it is not the first time you’ve had to lose everything you’ve built thanks to illness.
It Gets Worse Before it Gets Better
The thing is, now that I have admitted to myself that my health is getting worse and stopped, it’s got a lot worse. This fake layer of “I’ll be fine”, has gone, and now I can feel my illness in all its glory. And it is glorious. Gloriously shit!
This is such a common experience. By allowing myself to stop and rest, I can finally feel all my symptoms, which is both a blessing and a curse. It makes it easier to accept that stopping and resting is the right thing to do for my body. At the same time, it sucks because being sick, exhausted and in pain really sucks.
When you have an illness such as ME/CFS, which can only be controlled by pacing and radically resting, adapting to your new pace of life can be tough. I am currently in this transition phase of trying to figure out how much energy I actually have and how much I can do. It is only by finding the right balance of doing too much and doing too little, that I can hope to start building up again. It is a frustrating process of trial and error, of overdoing it and suffering as a result.
A High Stakes Process
This process is terrifying because the impact of overdoing can be huge on someone with ME/CFS. Worse still, the impact is always delayed, so you don’t get immediate feedback that you are doing too much. This means that you have to be careful in case you really overdo it.
As someone who knows a lot of people in the ME/CFS community, it is extra scary because I know so many people who have been in a similar situation to the one I am in right now. Many of them have slipped into severe ME (fully bed-bound, unable to see light, hear sounds or interact with people). This is always a threat hanging above my head, which is obviously very scary.
New Friends and Acquaintances
One of the joyful things about having had a period of relatively better health is that I was able to make new friends. Now, however, my health is slipping, so my illness, which is something they all know about, has become a bit more of a reality. It affects these friendships.
I know which of my old friends will stay through any health trials because they have seen me through past relapses etc. My newer friends are, as of yet, untested. While I am optimistic I will keep many of my current friends, it is hard to know for sure, because chronic illness does get in the way of friendship.
So far, most of my new friends have been awesome. But having ME/CFS puts pressure on friendships. It puts pressure on them having to learn how to be friends with a sick person, and on me having to explain and educate about my illness and experience while trying to process tricky emotions.
It is an Emotional Rollercoaster
Going through a relapse is an absolute emotional rollercoaster. I’m feeling so many things at once, and my emotions are all over the place.
I am grieving for all the opportunities, hopes and dreams that I had created while doing better with my health. Many of which are just unrealistic with my health as it is. I am unlikely to get where I want in stand-up comedy as so much of getting stage time and spots are through networking, which I am too sick to do. I am not well enough to work on writing and performing, and currently, I am often too depressed to write comedy. It is hard to be funny when you feel like you are losing everything you have worked so hard for.
I am lonely. Being sick is one of the loneliest feelings. Having a relapse is incredibly lonely for several reasons. Grief is a lonely emotion to have – it’s hard to connect with people. On top of that, I am back to spending most of my time at home alone. I am also painfully reminded that most people in Amsterdam, and most of my friends are busy ALL of the time. So it’s hard to schedule in time to meet people. Thankfully, I have lovely housemates and a cute cat, which definitely helps a bit. And my friends are really trying to carve out time for me too!
I am terrified that things will get worse, that I will lose all my friends, that I will never get better again, that I will be too sick and will go back to being incredibly poor again. Lots of things to be scared of. Fears that are very thinkable and realistic – so I can’t just write it off as anxiety.
The Takeaway Message
Mostly, I’ll be honest, I feel a little empty. The amount of emotions happening is overwhelming, and there are very few silver linings to be found. I’m sure as I slowly come to terms with my relapse, this will change, and I will be able to embrace more positive things again. But sometimes shit things are just shit. You have to have space to feel the shit emotions to work through them. So right now, shit things are shit, but I know at some point that will change again too. And on that deeply philosophical note, I will leave you to go and eat a chocolate cornflake cake, because of self-care am I right?!
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