Please feel free to scroll past the first couple of sections to the “Vaccine” paragraph! I just want to give context and be thorough as I know this is an important topic. However, I also appreciate how knackered we are and we may not have the energy to read much! You do what’s best for you!
This is my personal experience, if you’ve any questions or worries please seek medical advice.
I am completely sympathetic and empathetic to the vaccine conversation within the chronic illness community. I understand that people hold different views on taking the vaccine and I hope that you will respect my decision to have it. I’m fully aware that there are concerns that the vaccines have yet to be trailed on those with chronic illness (in clinical trials) and that this is of concern. It is a difficult choice. I want to share my experience because I understand and appreciate the concerns of reactions to the vaccine when living with chronic illness, I’m truly emphatic of that. I hope that by sharing my experience, others can make their own, informed choice.
I also, fully appreciate it may be difficult for some who are yet to secure a vaccine booking. Who have been left off the priority list. It is truly devastating. I myself was and had to fight hard for my appointment. It is a postcode lottery. I am completely aware of the damaging effects this has on your emotional and mental well-being. Especially after a year of living in fear of a killer virus and living with the perpetual notion within both the media and on social media of how disposal disabled lives are. It has been tough.
For me, having to fight to get on the list was an amalgamation of twenty years of medical and political ignorance of the severity of my illness. To have that bought to the forefront in the mist of a deadly pandemic was overwhelming to say the least.
But I’m one of the lucky ones. After five weeks of fighting, I got my appointment. So if you are yet to receive yours, I’m truly sorry and I see your pain.
This shouldn’t have been a fight for any of us.
I’ll put links for information that helped me at the end of this post.
I want to give a little background of my current health as I think it would be very irresponsible of me to say “the Covid-19 vaccine gave me side effects” without explaining that previous vaccinations also have, that every virus I catch has and does, that my health conditions leave me with a possible predisposition to have certain reactions to/like these. It is my choice to have the vaccine. I’m fully aware of the possibility of side effects and effects on my health overall. However, for me, the risks of possible death from Covid-19 or long term further deterioration from Long Covid, at all, never mind on top of my current health, outweighed possible vaccine reactions. Goodness, If anyone knows the true extent and devastation of post-viral illness, it’s the ME/CFS community.
I have severe ME/CFS, Coelaics’s Disease, Fibromyalgia, Neurally Mediated Hypotension, Chronic Migraines, MCAD, Osteoarthritis, IBS, Trigeminal Neurigal, Seizures.
I am on Biologic medication which should’ve automatically placed me in group 4 but somehow I was missed. I had to write to my surgery multiple times to explain that and to have ME/CFS recognised for group 6. Then, of course, Coeliac’s is now group 6. It wasn’t easy.
I am 99% bed-bound due to the severity of my ME/CFS. At my best times, every couple of weeks I’m able to move into the room next door and create a makeup look for my online content creating (it makes me feel like me again! And is worth the crash 😭). The rest of the time I’m in bed requiring complete care. I’m not able to sit with my family whatsoever and spend all of my time alone. I also can’t tolerate a regular diet and am prescribed powdered sachets, due to nausea and food intolerances (this makes sense shortly). So my body’s pretty low!
Regarding my recent history with vaccines, I have the flu vaccine regularly. 2019 flu vaccine took me 8 weeks from having it to before I felt back to how I was before I had it (that was a bad crash from the immune reaction), whereas the 2020 flu vaccine, I felt flu-y for a week then was back to my regular ill self. So I honestly think it’s down to my body at that time. I’ve also had Flu twice which has taken months to recover. So while part of me was concerned my body wouldn’t manage it last winter, again it seemed the right thing to do given the current situation.
Ok, on to the vaccine: Like others, I’ll be keeping a track of any side effects. I know it’s a genuine concern for many in our community & a potential decider in whether or not it’s taken. Therefore important to share our wealth of knowledge 😉
My personal decision, taken with medical advice, is that any side effects are outweighed by the risks & long term effects of Covid-19, especially given that my ME/CFS was triggered by a virus. Also that viruses take me a long time to recover from & seem to always trigger deterioration in my health.
I do have a history of allergic reactions and I am on medications to try and help with these. I had discussed the vaccines with my allergy consultant and the consensus was that because I didn’t have an allergic reaction to the flu vaccine, there was less concern of me having an anaphylactic reaction to this one. I was given AstraZeneca, not Pfizer because of my anaphylaxis history (MCAS) & they were really thorough.
I had the AstraZeneca vaccine. I don’t have a fear of needles so was completely fine. I did feel it, I know others haven’t. I feel absolutely fine at the time of administration.
Allergic reaction wise, my face has gone puffy & I have a small rash-this isn’t usual for me at the minute, anything new in my body seems to do this at present 🙄 so I’ve taken extra antihistamines. I’m not concerned.
I begin to feel very woozy after 20mins. I needed to ask my carer (my mum) to pull the car over twice. Need to lie down in quiet and begin to feel more generally unwell at the two-hour mark. Can’t stomach food, nausea has increased*.
Three hours after I have a sore arm, feel very woozy, a hot head and general unwell (on top of the normal). Nothing unusual for a vaccine for me as of now.
*This is why I mentioned my regular daily nausea earlier and issues with diet. I have an increase in nausea now (however this was a symptom I had prior).
The night is bad. Pain throughout the whole body, pain in legs. Keeps me awake. It was freakily similar to my viral pain from the first years of my ME/CFS, when I suffered a lot of viral symptoms. Feel very disoriented. Keep going to vomit but don’t. Vertigo attacks. Aching joints and I could feel the injection point in my arm (a heaviness too). Feeling hot.
My headache is wornsening.
Go to the bathroom at 3am and am so faint I end up on the bathroom floor for 30mins having tremors before I’m able to slowly make it to my bed.
I could feel the viral onslaught coming in waves and I simply did not have any energy resources to cope. My seizures and tremors can happen when I’m a) fainting or b) my body is crashing symptoms wise: this happened.
This does happen regularly also, so I wasn’t surprised. It was just quite overwhelming as I’m already so poorly.
Heady, limbs too heavy to hold up. Very unwell. Pain comes in waves. Nausea.vertigo. Faint. Complete bed rest required. Feeling too hot.
I took paracetamol.
Slept surprisingly well. Felt very buggy and groggy, this helped with sleep. Woke a few times with the pain but was able to get back to sleep.
Woke up very groggy. Unable to focus. Feeling the same symptoms as yesterday however they have lessened a little in severity and seem to get worse in waves.
A little tearful today. Just a lot on top of what I deal with.
Still extra nausea, vertigo, stagging, unsteady, shaking. Migraine (however these are regular).
Stuggled to sleep again due to viral pain in body and legs. Feeling generally ‘viral’ unwell.
Swollen glands under arms.
Wake up very groggy, heavy and fatigued. Have a viral ‘heady’ head. No strength, unable to hold my body upright all day. My usual symptoms have worsened and I’m having an increase in my seizures.
The groggy head seems to lift somewhat during the afternoon. The viral pain returns in waves now.
Still have swollen glands under my arms, my throat hurts a little.
The injection site is really quite swollen and sore (with a small bruise).
Slept better, more like normal. Was woken a few times by the viral pain in my legs but overall it was a better night.
Wake groggy, heavily fatigued, can’t lift head or limbs. Glands swollen.
Feel brighter within myself. Viral pain is less. However, the slightest task: trying to eat, go to the toilet etc is too much and I crash (having multiple seizures). Vertigo is still bad, particularly when lying down. Nausea has returned to my normal level.
My brain is less foggy.
The injection site is swollen, jelly like, bruised, itchy, warm, sore.
This is a lot to deal with when I’m so poorly and is making all of my other symptoms a hundred times worse. As I’m collapsed on the floor, coming round from the third seizure today, the toll on my body, it all hits me emotionally.
But, it’s better then the alternative…
Viral pain was quite bad, as were hot sweats. Arm swelling and glands painful throughout night.
Today I awoke feeling brighter within myself. Less foggy-headed. Viral symptoms appear to be easing and when they do come, the waves are shorter. Obviously, I’m fatigued and extremely heavy. Today I managed to sit up for cup of tea!
Two episodes of lying on floor as so faint.
My normal symptoms are still heightened.
The arm I had the injection in: still has swelling, swollen glands, painful joints, bruised.
Feeling groggy, viral pain and swollen glands again.
The arm I had the injection in: swelling has moved from the injection point to upper arm and hand is swollen too. I can’t bend my little finger and thumb joints due to pain, swollen glands, bruised.
I feel less viral in myself, more like I’m beginning to come out of a virus, if that makes sense. Fatigue is still overwhelming and just trying to get to the toilet makes me collapse to the floor.
I do now feel that I can see the way out of it and in a few days it’ll be time to just ‘pay for it’ with the ME/CFS PEM symptoms (because that’s so easy 🙄)-we’re getting there…big sigh…
Sleep well (in my relative terms). My arm causes me issues and wakes me but apart from that my night is more alike my normal.
Wake very groggy, very heavy, struggling a lot. Heady, heavy, all of my symptoms are worse but I feel an extra lull.
I eat breakfast and immediately have a seizure.
4 seizures and a few floor episodes today- my body’s having a bit of a hard time dealing with it.
My arm is still swollen. It has a risen swollen patch at injection sight, plus the whole arm feels fluid filled and is puffy. My hand is swollen, joints stiff and painful to move.
Swollen gland and sore throat.
Tomorrow will be brighter!
I slept remarkably well-unlike my normal self in fact! You know when you have a virus and you sleep? Well it was that kind of night, just zonked-that is very unlike me (my body is an insomniac fan).
I awake to sneezing! The swelling and fluid on my injection arm appears less today and am able to move my fingers more. Today I just feel like I have a cold (you know on top of the normal). There is a definite improvement.
Every time I try to sit up or do anything (like brushing my teeth, for example) my body lets me know in an aggressive way that that is not ok.
I have chills all day today. By early afternoon I suddenly feel a change and it’s as though I’ve gone back a few days: I feel incredibly viral once again, viral pain, very unwell, extra fatigue.
Still feeling worsening of symptoms but again I slept surprising well…
I really hoped by now I’d not have to be updating daily however, like yesterday I really feel like I’ve gone backwards. It feels like I’m back in those first few days where the viral symptoms were the strongest.
I felt very poorly during the night, struggled when I needed to use the bathroom.
Today finally feels a little different! I now feel the ‘post-viral-lag’ rather than overwhelmed with the viral symptoms. I’ve been able to sit up more today (but my body is letting me know it’s too much with my other ‘normal’ symptoms’-nosebleeds, fainting, seizures…). My crash comes mid-afternoon, just not as bad as previous days.
There’s only slight swelling at the injection point today.
Hopefully now it is just (laughing at myself for saying ‘just’ 🙄) a case of recovering from the worsening of my ME/CFS symptoms now.
As of today, I don’t feel I’m suffering the immune system response, therefore I’ll stop the daily reports and update this post when I feel I’ve recovered to my pre-vaccine self, so there is a complete timeline.
It is a lot of stress on my already very poorly body, there’s no denying that. I had already prepared myself that I would more than likely have some level of a reaction. Therefore I wasn’t concerned or anxious and knew to persevere.
I have seen someone with an autoimmune disease and other underlying health conditions have no reaction, bar a slightly sore arm, and someone with no underlying health conditions have a bad reaction.
I feel like the hardest choice is doing something that you know has a pretty high chance of making you feel worse (hopefully for just a few days). This is harder when you already feel so poorly. But then every action we do we pay for, quite literally, so it makes sense that we may struggle to find the energy to continue as we were while our bodies are creating the immunity.
I just want to give as much information as possible about my experience in the hope it may help someone else, while completely appreciating everyone’s experiences, views and situations are different.
My experience is certainly not meant to scare anyone. I think most of us within the chronic illness community are firstly, very used to discussing symptoms, that it is second nature and secondly, appreciative of the sharing of knowledge that may help prepare us. Our bodies are different from healthy ones and we sadly do have to think differently because of that. It is about being informed.
This last week or so has been HARD. There have been many tears and it is, of course, a lot that I didn’t need but it’s the protection I DO NEED. I’m glad I had the vaccine. I will have the second. I hope that my experience aids in your informed decision making.
My advice? Prepare. I am lucky that I have people who care for me. Have bland snacks available. Water to keep hydrated. Medication nearby. Someone to call if you need help and most of all, REST.
But you guys, we’re Spoonie’s, damn it, WE’VE SO GOT THIS*!💪🏻
*Don’t mind me while I curl up in a ball and cry again tho LOL
Oh, and you know what was really nice? Being able to tell my nieces that my body had made the antibodies to fight the nasty virus and see their happy faces 🥰
Letter to GP re Vaccine List Group 6 ME/CFS – Includes Matt Hancock
Here’s a great article that explains why some people have reactions and other’s don’t:
Covid Vaccines And The Immune System
Just a little note: I know that vaccines can & have sadly been a trigger of ME/CFS for some (I’m so sorry if this is the case & completely appreciate your desire to not take the vaccine & all that entails). Vaccinations did not contribute to my chronic health issues. I had regular childhood vaccinations and a perfectly healthy childhood and teenage years. I got glandular fever which triggered my ME/CFS (as I know many people have). This then lead to the development of further health complications. With severe ME/CFS I have chosen to take the flu vaccine (I share that response to put any potential reaction to the covid vaccine into context).