• AnchorFm

I am very fortunate to have received my first dose of the Covid (Oxford/Astrazenica) vaccine this week. Wahoo! There is a lot of concern here in the UK for groups who are slipping through the net of the Covid19 Greenbook, which includes Vaccination Priority Categories. That being a guide document for GPs, as I understand it. MEcfs patients are, unsurprisingly, facing a challenge to secure priority vaccination, especially if under 50 years of age. So I don’t underestimate how amazing it is to have got in so soon. My 2nd dose is due in May.

The ME Association have compiled a template letter to send to your GP if you are struggling to secure a Group 6 priority vaccination slot as an ME Sufferer. You can find it in the following link – https://meassociation.org.uk/me-association-covid-vaccine-priority-template-gp-letter-v2-10-02-21/

The pandemic has improved information sharing with my GP Practice. There has been more opportunity for indepth conversation by phone. And actually securing a phonecall without argument has been a breakthrough. It can be a battle, even though I’ve been homebound for over 16 years. They are beginning to listen, and comprehend that even though I have severe MEcfs, I am generally of a pretty cheery disposition. And no ‘it’s not all in my mind’. Whether any of this factored in the vaccine appointment at home being booked so soon, I don’t know.

With my husband asking several times ‘when would I (me) be vaccinated‘, when he was contacted and his own slot subsequently postponed. Pressing the points of ‘chronic neurological condition‘ and ‘asthma‘, in relation to me. Must have helped in some way. He tirelessly fights my corner and makes me a priority. I truly am so very blessed!

I also think possibly along with Community Nursing, who have so kindly continued administering my B12 injections during the past year. The last by a redeployed physio, who may have put a word in, but I don’t know. We had a good chat about *GET and *PEM. They are all so lovely. The first redeployment was from sexual health. Another fabulously caring person. They are all so kind, caring, non-judgemental. ME sufferers can feel judged, A LOT. Community Nursing have such a calm manner about them, keeping you engaged while they stay with you to ensure all is OK with your injection. Honestly, they are all amazing.

The vaccination

I am extremely grateful to the two medics who came to our home this week. And who were greeted upstairs by PrincessT my companion sighthound. Who loves people and assumes that everyone and anyone who visits is here to take her for walkies! The medics also got the Christmas tree experience. Both still on display until our children can visit. One in our bedroom, as I have to spend a great deal of time in here. It can’t be easy drawing up a syringe with precision, whilst simultaneously keeping a patient relaxed and distracted. Another painless injection, which I appreciated greatly. It did feel different not being injected by Community Nursing, as they know me so well, but that wasn’t a problem at all. I’m just so grateful it was possible to be vaccinated at home.

Note: If you do have the vaccination at home, you may need to ask the medics to wait with you for the recommended 15 minutes post-vaccination period. It’s unsurprisingly a quick turnaround, as they are very busy.

Any tips?

One thing I would say, is if you can. Try to avoid having it alongside *PEM. Yes, I know, that is virtually impossible. I appreciate it’s understandably short notice on vaccine appointments. But, if you can or can’t. Be as rested as possible. I think it might help.

Other things to consider –

• Definitely have your preferred pain/fever relief available in your medication stock.
• Aniseed boiled sweets in case you experience nausea.
• Peppermint or Lemon & Ginger herbal tea on tap.
• Lots of cold water.
• Bland food incase your appetite goes. My go to are baked potato, scrambled egg and bananas. But not all mixed together, that would be a bit yuk!
• And of course your usual cushions, pillows, blankets, eye-mask, etc. To aid resting.

So how has it been post-vaccination?

The initial few hours post-vaccination were fine. My arm was a bit achey, but bearable. Then about 12 hours in (4am) the fever/fluey experience revved up, very achey lower arm accompanied by the ‘joyous’ nausea, off balance and feeling very overheated. Thank you to my husband for helping distract me and most of all for looking after me. I was flat out. I’ll be honest, yesterday was grim. Lots of gazing through gritted teeth. (I’ve done that so much over the years, nausea just doesn’t get any easier.) My feet were boiling.

I’m now on day three. Awake boiling at 5am for a dose of panadol (other pain relief brands are available), but a few hours after that and things are much more settled. The 24 hour vile phase has broken. I just feel completely wiped, jelly legs, but the nauseous and fever feeling seems to have passed. I ate breakfast. Hallelujah!

Without intending to sound over dramatic, if you are a homebound MEcfs sufferer, it would be a good idea to have someone with you for 48 hours post vaccination. To help with food and drink, keeping you chipper and your daily needs ie. using the bathroom, getting out of bed, sitting up etc. I don’t think the fatigue is quite as intense as post-flu jab. But again it is difficult to gauge. I’m still very glad to have had the vaccination.

As I say, I don’t actually know how much of the ‘vile 24 hours phase’ can be attributed to the vaccination or to MEcfs PEM. As the day before the vaccination I had experienced a very bad crash. [Had tried to do a thing.] You know the ‘lie down immediately or you’ll collapse’ type immediate crash. This had happened before I knew the vaccination would be taking place And I had felt unwell on the day, (when do any of us *pwME feel well) but rallied before the medics arrived. Note to self –

By completely resting!

So all in all, it’s not been too bad. Very glad to feel a bit more human today. And SO grateful to my husband for looking after me, and sourcing a lovely flask to add to my list of helps, for storing cold water to be available at any time overnight.

It must become so tedious asking how I am all the time. He is an absolute star!! And I hope as my carer he is afforded vaccination very soon.

I hope my experience is of some help.

AND i’M over the moon.

Roll on May for the 2nd dose.

Postscript: I am very happy to advise that on my husband contacting our GP Practice. He was booked in for an evening slot and has, as my carer, now had his first vaccine dose.

Have a blessed day.

Penny @hopefoundinme

Below are a couple more informative posts about Covid19 vaccination if you’re need of more perspective and reassurance. I hope they’re of help.

Covid Vaccination by Dr Abbie Writes

CORONAVIRUS VACCINATION : WHAT TO EXPECT & MY EXPERIENCE by Caz of InvisiblyMe

*GET – Graded Exercise Therapy

*PEM – Post Exertional Malaise

*pwME – Person with ME (MEcfs – myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome)

While you’re here why not check out more blog posts in the ME/CFS LIFE category below.