It seems recently that I spend most of my time writing about my health, and today is no different. This sort of stuff can be a regular occurance, but I never really talk about it. I’m often trying to maintain the pretence that I’m just getting on with life like everyone else, when in fact, the adjustments I need to make for oft simple things, are incredible.
This is a major hurdle for me. Already using a wheelchair, having a lot of fatigue and struggling to breathe is difficult enough, but being immunosuppressed also means that things other people get through in a matter of days, takes me weeks and can be very dangerous. A simple flu can wipe me out.
Today then, is the 17th day of my most recent bed rest expedition. I have managed to drag myself out of my pit of despair (bedlock), and to my desk to try and feel some level of normality, however I am still vastly exhausted. It’s the 13th of December and I have been in bed since late November.
Why? I don’t know.
Shortly before the 17 days, my chest started to get tight. More tight than usual. I tried to manage it. I used my inhalers (more than usual), and tried to rest, but they were having no effect. Before I knew it my temperature had hit 40.6°C (105.08°F), and I was either sweating profusely in bed, or shivering violently. So much so that I would only stop shivering if I was sat next to a radiator, with a dressing gown on. It was difficult to manage. It peaked at 41°C at one point.
I finally relented and agreed that I needed a doctor. Now I know that the NHS (of which I am a huge supporter), is under massive strain at the moment, and there’s a severe lack of GPs, but the GP in our surgery working that day absolutely point blank refused to come out and see me, and I thought that odd. He suggested that I wrap up warm, and be pushed along to the surgery and he’d see me there. In snowy December.
Given I was smashing my teeth together shivering, I explained through tears that that just wasn’t going to happen, and my daughter and I finally managed to get him to do a home visit. We had to wait of course, which was perfectly fine, but his insistence that he could not travel 0.2mi to help someone who is clinically extremely vulnerable and having to argue with him when I was that ill, was astonishing. He even had the nerve to tell me he would be unimpressed if he got here to find I was not ill.
He also suggested an ambulance if I was ‘that bad’, but given my previous experience of knocking myself out when I stumbled and something fell from up high and cut my head open, I told him that this was not going to be an option. I was bleeding quite a bit that time, was slurring my sentences, had a gash in my head, and I’m on blood thinners (so I could have developed a bleed), and the ambulance service told me to take a taxi to the hospital. A Taxi. So they’re not going to come for a fever, and I don’t fancy sitting shivering in a cold waiting room/ambulance getting worse.
So he came out. He took my temperature and got the same result we did. He took my pulse and O2 and got the same results we did (we have an oximeter etc for safety). By that time I was delirious and I remember very little of it past then. Whatever had taken hold had done so properly, and my immune system was not going to be able to stop it.
So he gave me steroids and antibiotics. He never told me what he thought it was. From then on, and over the next 2.4 weeks, I struggled. Firstly the antibiotics had to be changed and the steroids were stopped as my throat closed up further and started to bleed. I was still hosting a raging temperature, but if I even tried to sleep I would wake up with my throat closed off (my tongue was glued to the back of my mouth). I needed to take regular drinks because my mouth had stopped producing saliva. If I did manage to sleep any longer than a few minutes, I would wake up absolutely soaked, head to toe and shivering.
We spoke to the doctor once more and sent him images of the back of my throat (brilliant facility). The new antibiotics I was now on were starting to work, but my throat was red raw (just bleeding constantly). I couldn’t eat or drink anything but mashed potato and gravy, and even then very little of it. My daughter spent a good few nights sleeping in my room with me to make sure I was woken up at certain points to take saliva inducing sprays, antiseptic mouthwashes and a range of other things that tasted horrid. She was absolutely exhausted bless her, but she just kept going. She’s relentlessly good.
Later, my son started taking over to help her, by setting his alarms to get up at intervals to make sure I could breathe, and that I took regular doses of my medication. Also so my daughter could sleep some more. When I did wake up, I was soaked and shivering, and we were resorting to using the hair dryer to warm me up instantly because I had gone through all my jammies in one night. It was unreal. They were both also constantly checking my temperature and O2 levels. I would have struggled a lot more without their help.
Only about a day or two ago I started being able to slowly eat croissants, and now while I am less delirious, and I have had a pie and some sausages, the throat pain is still there. I need to make sure I don’t relapse, otherwise I will have no chance of enjoying Christmas with my family. So I will be continuing my rest, despite wanting to get out of the house. The last time this happened at Christmas, I could not eat properly on the day and that was after I had been released from emergency resus in A&E.
I am glad I avoided that this time, but it just shows how careful I have to be. My immune system is suppressed because it’s over active and it attacks my skin and joints. I still live with the pain of this. It should be being brought down to a normal activity level by the weekly injections I take, however that sometimes changes and it seems to drop to a level where even a moderate bacterium/virus can give me weeks of unrelenting hell.
I can write forever on anything, so I am going to wrap this up, but the point of highlighting this period of illness for anyone who knows me, and who reads this, is that I take extra precautions exactly because of situations like this. I was shielded for such a long time during the pandemic for exactly this reason. I still wear a mask around people for exactly this reason (yes sometimes even outdoors), and in fact if other people still did, maybe I would have avoided major infections like I have over the last two years.
Alas, it’s a hurdle I must keep jumping.
I have aspirations to find employment again. Now my children are older, I would like to shed the stress of self-employment that I have been maintaining for decades, and maybe even find a new career. I would like to spend more time in the outdoors to help with my mental health, and we are already formulating a plan to do that very thing. It’s big, and bold, and will be an adventure, but we will be addressing a major problem for us all (constant stress and worry). I’ll talk more about that project later.
These things are all things I can do (with a bit of help), but they must be done with the wheelchair, fatigue, breathing, and vulnerability to certain situations taken into consideration. It’s not a puzzle I have quite yet solved, but I am working on it.
As usual I didn’t tell anyone how ill I was, as it makes me feel more troubled that the world is passing me by, while I whine, whimper and shiver. I posted on FB about my epic boss battle, and of levelling up only after getting out of bed today, and Dad called me immediately. My daughter now has instructions to bypass me, and let her Granddad know immediately when I’m significantly ill. Fair enough, lesson learned.
For now, I have been well enough to write, and I’m off to rest.
Stay safe,
Emma