The Downside to Chronic and Unknown Illnesses•
Posted on July 19 2020
It’s not often you’ll see a raw photo of me looking like I have been dragged through a hedge backwards, however on this occasion this is something I wanted to share with you.
You see, living with chronic illnesses isn’t always easy.
For me, they haven’t quite defined what it is that is going on with me, yes I have been given the titles of ‘Fibromyalgia’ and ‘ME/CFS (Chronic Fatigue Syndrome)’ but I don’t think they have quite got to the bottom of it yet!
The below photo is evidence that this is so…
This photo was taken at some god-awful time during the early hours of a Saturday morning during a hospital sleepover, 2 weekends ago. You see my body likes to reject things and reacts in very strange ways.
On the prior Friday I had the progesterone implant fitted to try to help control my periods, they contribute to flairs and whilst they are erratic it means controlling the Fibro and ME is more difficult.
As the week went on things changed, by the Sunday I had chronic diarrhoea, pain all over, and the chronic fatigue had set in. By Tuesday I had started to experience mild anaphylaxis every time I was eating, stuttering, almost no short-term memory and lots of inability to deal with anything. No significant swelling, but tingling across the front of my face, tongue, and a scratchy throat. On Wednesday and Thursday this progressed, and I needed to take antihistamines to suppress the reactions as swelling started in my airways and lips. Friday was a different story!
Friday I was already worried about eating so at lunchtime I had a dairy, GF, probiotic drink, I had planned to keep it simple with food that day as we were having tappas that evening. By sip 2 the reaction was what I call full frontal (lips, tongue, cheeks, eyes), the itching and tingling started. I was able to suppress it with a couple of antihistamines and didn’t eat until the evening.
During the evening we had dinner, I noticed I was having difficulty swallowing by the end of it so knew I was in for a shit storm, it came on quick and came on whilst eating foods that I should have been fine with. My tongue swelled so much I couldn’t talk, my breathing got shallow and my whole face swelled. The problem began because I took 4 antihistamines, these didn’t do a thing and I had taken too many to use the epi-pen, so I took another 3. All this did was reduce some of the throat swelling and some of the swelling down one side of my face. I took another 2 antihistamines at this point as we were 2 hours into this and realised we needed to get to A&E. By the time I got to A&E I looked like I had a stroke, my face was swollen all down one side and I had lock jaw… who would have thought that swelling could cause this!? … not me!
So, this was a barrel of events, that were not much fun. Back a while ago I had some advice in the allergy clinic, they told me I could take 4 antihistamines an hour, up to a maximum of 20 tablets. Apparently this is not the case, I should have stopped at 3 and went straight to A&E.
The problem is I have not got much specifics on what my allergies are, they are coming in thick and fast. The last visits with the allergy clinic resulted in skin testing only, but as we all know, skin and body internals can and do react very different.
Finishing off on the hospital trip – hospital couldn’t treat me due to the antihistamine levels I had taken. They didn’t check me over properly as they didn’t want to come near me, thanks COVID, and they have passed me over to the allergy clinic again. I had to stay there and wait it out to ensure that there was no delayed second round. The hardest parts were being in hospital, unable to talk, being on my own and trying to explain to them what was going on and what had happened. I know they wrote things on my notes saying I had reacted to nuts, this was incorrect, and they recorded nuts as my only allergy – this is very much not the case.
What we have established from this is that there is something deeper going on, and something needs doing about it! I hope that I don’t react that severely anytime soon as it was PAINFUL, and of course it has made my body very, very tired in the days that have followed.
I had a follow up with my doctor on the Monday who immediately removed the implant and has agreed more testing needs doing. As to what, who and where we don’t really know at the moment.
First steps are to see how I get on now. Currently we are 2 weeks on and the reactions are subsiding a bit. I have had a few meals where I have needed 2 or 3 antihistamines after but on a whole I am experiencing the tingling every time I eat or drink, without the significant anaphylaxis. It means I get tired after meals and I am having to nap daily to recharge.
In the meantime, knowing the NHS waiting times are really long at the minute I have paid for some private allergy testing to give me some guidelines while I wait. I am wating very plain foods ensuring that I stick to organic and am most certainly not risking eating out anytime soon.
I know this may seem weird to you to ready but, my body has a history of rejecting things. As the years are going on the auto responses are becoming more severe and the good thing is that I am learning to read the responses very quickly, mostly catching them before things get too bad.
I wanted to share this experience with you as life isn’t made of roses, sometimes were handed a pile of crap in which we need to make the best out of and decipher. Events like this don’t stop me, in fact they spur me on and help remind me, that this is in fact why my business exists. It helps me understand that there is more work to do, more people need help and it helps me acknowledge the fact that I am here to help you as well as myself too.
If any of you are struggling, please don’t be afraid to reach out. I am here to help and you always have a safe space to chat with me.
****Update for you as of the 23rd of July.
The reactions have slowed thank goodess. I have had the results of the private allergy test and it has brought up Tomatoes, Soy and Salmon as moderate allergies and Strawberries as a medium allergy. Now, I eat tomatoes, soy and strawberries EVERY day of the week!! we are 2 days in with me deducting them from my diet and the reactions have slowed to a slow tinglying after meals!! YAY!
Well... not entirely a YAY as it is more to restirct from the diet but hopefully this will help keep me in the safe zone until I meet with the NHS clinics for more testing!
The Downside to Chr...
It’s not often you’ll see a raw photo of me looking like I have been dragged through a hedge backwards, …Read More