Today, I’m going to share something a bit more personal. It’s something that I’ve been struggling with for a while now and I want to just ramble a bit about what I’m going through in the hopes that it’ll help myself, but maybe also other people in similar situations. I find it hard to explain it all in person because it’s been super complicated, so hopefully typing it out will be easier and give myself a sense of perspective.
(Apologies this post turned out to be really long!)
Back in February was when I first started to feel unwell. I had a sudden onset of brain fog where I couldn’t concentrate or focus on anything properly, I didn’t really feel like I was in the present and living, and consequently I was exhausted. Around this time, I was extremely stressed out. There was a lot going on and it was a period of anxiety for me for sure. Perhaps this caused me to become ill, but I still can’t be certain.
Despite the brain fog and tiredness, I continued on with my life. Because that’s what you do when things go wrong, right? You just push through and hope for the best. But in this scenario, this really wasn’t the best thing to do. Weeks later, I became so fatigued I just didn’t know how to cope. I’d look in the mirror and I didn’t even look like myself. I was just so pale and exhausted and I was often crying out of frustration. I was at university at the time so it was super difficult trying to keep up with work and socialising when I was so ill. I could barely get up to do anything. There were many occasions where I pushed myself to get out the house to go to lectures or career talks, but I could barely make it up the street without feeling out of breath, like my legs were super weak and my throat feeling super uncomfortable (because my glands were so swollen). I remember sitting in a lecture room with my eyes barely even open and feeling like an absolute ghost of myself. I would go home and immediately jump into bed and sleep. But the worse part was that, even though I was so exhausted (exhausted beyond what I’d ever even experienced or imagined to be possible), I couldn’t actually fall asleep (I often struggle with sleep problems). And even when I did, I woke up feeling exactly the same as before: tired. Except the word “tired” now means something completely different to me. Before “tired” meant feeling low in energy and finding it difficult to do things. Now, “tired” means my body feeling absolutely drained, my whole chest heaving for breath, a heaviness to the way I feel and move, so much so that the extent of the tiredness sometimes makes me feel numb. It makes me wonder why I ever complained of tiredness before.
Honestly, the beginning of this illness was the most frustrating period of my life because I had no idea what was wrong with me. At one point I thought it might be related to my mental health since I have struggled with anxiety and mild depression in the past, but it seemed that whatever illness I was struggling with was causing symptoms of anxiety and depression, not the other way around. I would tell people I’m ill and they’d say “oh you don’t look ill” and I felt so helpless, because on the outside I looked healthy, but on the inside I felt like something was gnawing away at my insides, swallowing up all my energy. How could I make someone else understand when I didn’t even understand myself?
And the problem was that I went to the doctor multiple times and it got me absolutely nowhere. First time, they gave me antibiotics, thinking it was some flu-related illness due to swollen glands and a fever. I took the antibiotics, twice a day for a week, and if anything it made me feel worse. I felt so nauseous I had to force myself to eat and I spent a week in bed doing nothing, which is so hard for me because I’m such a productive person. So I went back to the doctors again. They thought I might have glandular fever so they gave me a blood test. I waited a week for the results to then ring up and find out that they didn’t have any results and I’d have to redo the blood tests. I was absolutely exhausted and did not have the energy to leave the house, but I had to force myself to the hospital to get them done. I think I might have ended up at the hospital twice because the results were inconclusive again, but either way, the blood tests came back completely clear and I didn’t have glandular fever at all.
At this moment in time, I was so conflicted about the results. Part of me obviously didn’t want glandular fever, but another part of me hoped the blood test would show something wrong because I was fed up of not having an answer. I had to keep telling my lecturers that I was ill and couldn’t turn up to class, and had to miss out on all the university societies I was a part of, but I didn’t know how to explain it when I didn’t have any proof. I felt like I was lying even though I knew it was the realest thing I’d ever faced.
Skip a month or two and I was back home for Easter break. I decided to go to the doctor in my hometown to get a second opinion. I was told to have another blood test so I did, and it all came back clear. I went to see a kinesiologist and she told me it was likely stress-related (which I’m unsure about since it’s summer now and I’m not stressed) and gave me some remedy drops. I took these four times a day for three weeks and I think for this period of time I did almost feel like my normal self. I somehow managed to complete my uni assignments and finished the year (hooray!) However, when I stopped taking the drops and started reading again, the illness came flooding back again. Every time I concentrated on something, whether that was reading or playing a game or even holding a conversation, brain fog and exhaustion hit. It felt like the slightest hope that I was going to recover was just pulled right out of my hand.
Fast forward to a month or so ago, I went to the doctors again. I took in a notebook and listed all my symptoms and everything that had happened only for the doctor to look at her watch halfway through and say “I don’t have much time.” You can imagine how distraught I felt to have gone through 5 months of illness to have a doctor totally disregard my attempt at an explanation. But she did give me one small piece of information that I’m holding on to for lack of any better explanation and that is: I might have post viral fatigue. I had never heard of this term before and honestly I don’t even remember having a virus back in February, but I guess these things can hit you without you even realising. The doctor gave me a sheet of paper for an online sleeping course to help my insomnia, and then told me she’d “send me information” about a consultant referral. She couldn’t refer me to a fatigue consultant herself since I was registered permanently at my university doctor (and only temporarily in my hometown).
As you would expect, I waited for the doctor to send the details, but no details were sent. I rang up to query it a week or so later and the receptionist told me “a temporary account only lasts 14 days so your account is inactive”. She then told me that I had to come back to the doctors to fill out a form before I could be given information. Why didn’t the doctor tell me this at the appointment? And how did I make an appointment a week ago if my account was inactive? It was absolutely ridiculous and by this point I had had enough.
So here I am now, with another doctor’s appointment booked at my university doctors for when I make a trip up there in a week’s time. I am determined to get a referral for a consultant appointment so I can finally get some support!
I suspect that with post viral fatigue it’s a case of resting and waiting for it to just disappear, but honestly I’m worried about when I have to start uni again in September. Although my fatigue is not as bad as it was in February, brain fog still affects me and my energy levels are still lower than usual. Every time I feel particularly exhausted my throat feels inflamed due to my gland (which seems to be permanently swollen) and I feel nauseous. A lot of the time my head is so cloudy I don’t feel like I’m really with it and it’s difficult to process things. I’ve noticed that sometimes I forget a word for something, or I type out a word that’s different than the word in my head, and it worries me. All I need is some reassurance and support from someone – a doctor, consultant – who understands what’s going on in my body so that I can make changes for recovery. It’s just been so difficult to even get to this point.
Honestly it’s been such a whirlwind of a year, but I’ve made it this far and I feel like, despite all this, I’m staying positive. If you’ve made it this far on this post, I’m impressed. Five and a half months of my illness shared in one post is a LOT to take in, but it feels good to share it out in the open.
If anyone has any advice for me, please leave a comment below (at this point, I will consider literally anything!) and I wish you all the best health ❤️