This past two weeks have felt completely surreal. Having thought I may just have scraped through the exertion of two recent eye tests, one exceedingly protracted and inaccessible one. Which however hard I tried to organise couldn’t be done at home. (Next time, believe me, they will be.) And hoping I may have just got away without a major relapse MEcfs-wise. Although I was already paying.
I was wrong!
Everything went seriously down hill the week following the eye tests. Far worse than even I could have possibly imagined.
Here is a synopsis:
- Antibiotics prescribed.
- Slight reaction to first dose of antibiotics.
- Followed 8 hours later by…a MAJOR reaction to the second dose of same antibiotics which went on for hours. The peak 2 hours.
- Advised Doctor the following day.
- Advised I experienced anaphylaxis. I can confirm it was awful.
- *EpiPens prescribed.
What is an *EpiPen? A hypodermic device that administers a dose of epinephrine, used for the emergency treatment of an acute allergic reaction.
- Said antibiotic added to banned medicine list.
- Reprimand for not calling Emergency Services straight away. By Doctor, A&E Doctors (I saw the raised eyebrows and look of complete shock from behind the mask), and Emergency Services.
- Advised to call Emergency Services if further reaction happens.
- And it did, several times. Still getting the tail end.
- The last paramedic crew who attended advised me that the first reaction was a warning from my body which I shouldn’t have ignored. The problem is, MEcfs does this alot. And one can become a little too stoic for one’s own good. Definitely the case this time.
And There Is More
- Four visits to our home by paramedics in four days.
- Two trips to A&E by ambulance.
- First use of an *EpiPen (they work quickly btw).
- One antihistamine injection.
- One antihistamine infusion.
- One steroid infusion.
- Strong steroid prescription.
- Prescribed antihistamine for 3 weeks.
- Referral for allergy testing.
- Taken off all pain meds in case of any unexpected reaction.
As a result
- Unable to eat for a week. Still struggling to eat any meat protein. My body detests Soya protein. Thankful for eggs and cheese.
- On 100% bedrest.
- A fridge ordered for our bedroom.
- I haven’t managed the stairs since returning from A&E.
- Initiated stairlift grant and permission process. Hoping it’s successful and can be done. We should have put this in place a long time ago.
- Numerous strategies initiated to help us manage and to enable my husband to return to work.
- Met ten wonderful paramedics.
- Remembered at A&E by name by them and chatted to in the ambulance waiting bay area.
- Met two amazing A&E Doctors.
- Got to chat a little about Hong Kong to one of the paramedics who lived in Asia.
- Evangelised to paramedics whilst I was receiving treatment in my bedroom and in the ambulance
- Saw inside two ambulances and got to travel horizontal on a bed twice, backwards.
- My husband, who continues to be amazing, is getting bored with stairs.
- Again reminded of amazing friends.
And all because I did a thing and my body has decided that it doesn’t like yet another antibiotic.
In light of all this, we then set to getting strategies in place to help us cope and for life to continue as best possible. One of them has been to invest in a fridge upstairs. This means I have food and drink when ever I need it. And will save my husband’s legs, and for when he has to be out he knows I have sustenance readily to hand. A fridge upstairs is something we have been meaning to invest in for some time. As I spend a lot of time in our bedroom sleeping, resting and living.
The other strategies are, more supplies upstairs and looking into having stairlift fitted. As mentioned earlier, I still haven’t managed the stairs two weeks later. And had a major crash this morning, meaning I couldn’t shower…again!
For some unknown reason the purchase of a fridge, mention of the need for a stairlift and other coping and management measures (which we hone and adapt continually and have done for 18 years and get better at every time) has caused quite frankly baffling consternation amongst some extended family. Along with accusatory tones and the use of negative words which I never use and the suggestion that I don’t want to recover, or that strategies should wait. Soooo basically, let’s not be hasty. Just starve while your husband is out. And let your doggo pee in the hall!
I am so utterly weary of it and all the pointless explaining that comes with it. 18 years and I am still ‘having’ to explain MEcfs, the reality of it and what it does. With the fact that I have donated time, data and a considerable amount of blood to the UK MEcfs Biobank in London for research purposes, being conveniently forgotten.
Actually, I don’t have to keep explaining or justifying my situation, existence, disability or ELC at all. As a lovely and incredibly helpful physio said at the beginning of ME. “Explain once. You have done your part. The rest is up to them, if they choose to accept it or not is their problem not yours. You are under no obligation to keep repeating yourself or trying to prove anything“. Six million five hundred and thirty three explanations later!
*ELC – Energy Limiting Condition
A specialist OT, from one of the few Specialist MEcfs units, I had contact with for over a year identified these issues too. Highlighting the need to improve assertiveness to help deal with similar repetitive, obstructive, negative and draining attitudes. Should I now anticipate being berated on my own blog space? Which would be incredibly stressful. Stress being something I am expressly instructed by paramedics to avoid. Perhaps I should just circulate a copy of my management strategies written for me by another specialist OT (down to reading windows) along with all my medical notes. No you’re right. Not a good idea. And wouldn’t be believed anyway.
But whatever! No more. I choose life, being proactive and getting on with it as best as we possibly can. No more pointless explaining. I have a life to live and a major setback to recover from.
Moving On To Other Strategies
An upgrade of my art space upstairs. I had been using a redundant bath bench. Classy! Now I have some lovely cube storage courtesy of Wilko, for my colouring/sketch supplies and devotional/Bible. It is so much better, and far more practical than a shelf with suckered feet! Lol! Thanks again to my husband and his patience putting it all together.
So that’s my news. EpiPens are a new and unexpected addition. I hope allergy testing will provide clarity and help vastly reduce the need to use one again.
MEcfs, the gift that keeps on giving. Such fun!
Thanks for stopping by. PrincessT continues to keep me company and amused with ceaseless demands for what I am eating or snacks.
Have a blessed day⚘