Why I will NEVER have a flu jab again

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So it’s that time of year again, when carrying tissues and hand sanitiser are as important as making sure you have your keys and purse. A shopping trip becomes a slalom course, as you try and dodge the sneezes and coughs, and sleeves are pulled down over your hands when you have to hold on to a handrail, rather than risk getting the germs on your hands.

I’ve only had the flu a couple of times in my life, along with swine flu a few years ago, and it is hellish. At the height of it, the house could have been falling down around me and I still couldn’t have ventured from my bed.

So, about five years, I thought I’d do the smart thing and have a flu jab. As a single mum I couldn’t afford to be out of action – who’d look after the kids and the house? I wasn’t eligible for a free one, so I handed over the obligatory £10, and let the pharmacist inject me with the vaccine.

24 hours later, I started falling asleep, anywhere and everywhere. I was sleeping 18 hours a day, 7 days a week. It was horrendous. I would manage to stay awake long enough to take my youngest to school, then go home and sleep until the alarm woke me at 3pm to pick her up again. Then I would fall asleep until it was time to make dinner, and after eating I would sleep again until it was time to go to bed. My days became a blur of alarms going off.

This wasn’t a choice. It was exhaustion, the absolute inability to stay awake.

After a few weeks of this, the fatigue started wearing off. But it was replaced with pain. Severe, unrelenting, intolerable pain. And it hurt everywhere. Worst affected was my spine and my hips. It took a couple of years, yes years, to finally have a referral to a rheumatologist, and after an MRI I was diagnosed with arthritis of the spine. The damage had caused spinal stenosis, which was squeezing the nerves, and the neural pathway which ran down the front of my thigh was affected. I also had a blown disc, and degenerative disc disease.

I was 42.

Further tests revealed joint damage in my hips, along with my knees, ankles, shoulders, sacroiliac joint…in short pretty much every joint in my body has been damaged.

And this all started immediately following the flu vaccine.

Of course, various doctors dismissed this. But I know my body, and I know that somehow the vaccine caused some kind of response in me, which caused the fatigue and the joint damage. I felt it happening. 

My mobility was massively affected. At one point I even had a wheelchair. But I knew that once I got in that thing, I wouldn’t get back out. So I gritted my teeth, and drew on my stubborness, and went to crutches, then one crutch, then a walking stick. I was damned if this thing was going to beat me.

(Of course, I blinged the cane to hell – glitter, sequins, the lot. Hell, if I had to use one I would bloody well make it pretty!)

Blood tests always came back negative. Doctors refused to entertain the idea that I might have a sero-negative auto-immune disorder. They refused to send me for a blood test to check for a genetic marker which would have shown at least a possibility of AS (ankylosing spondylitis, an auto-immune arthritis which affects mainly the spine and sacroiliac joints), even though I was displaying the classic symptoms. I was told it was my age – 42. AS can lie dormant in people with the marker, and then flare up when it is triggered.

I became an advocate for my own health. I researched, I read, I studied. I learnt which foods are anti inflammatory, when to use heat, and when to use cold. I learnt to recognise when I was heading for a flare up, and on those occasions to be kinder to myself. I also learnt that I cannot take NSAIDs (essential for reducing the inflammation in arthritis) when I ended up in A&E with a suspected heart attack.

And all this because I wanted to make sure I was well enough to care for my children.

Oh the irony.

I was put on a diet of heavy duty drugs, highly addictive pain killers. Luckily I can take them or leave them, and I don’t have an ‘addictive personality’ anyway. They’re GREAT for insomnia though! I was also prescribed amitriptyline to deal with the nerve damage which affects my leg. If you can imagine the worst toothache you have EVER had in your life, and picture it in your thigh, you’ll have some idea.

Even those closest to me had no idea how much pain I was in, most of the time. I became good at smiling through it. But sometimes it couldn’t be hidden. Those were the days when I could only move from my bed to the door on my hands and knees. The times when I could only get downstairs on my bum. The occasions when it would take me 10 minutes to climb one flight of stairs because every movement felt as if broken glass was being hammered into my spine.

My children had to witness all of this.

I was supposed to be the strong one.

I suffered steroid injections into my spine. In desperation I underwent radio-frequency ablation, where the nerves in my spine were burnt – this is done when you are wide awake. That didn’t work for me at all.

Other medications were discussed – gabapentin and pregabalin (both epilepsy drugs) – but the side effects were something I just wasn’t prepared to risk.

Five years since that flu shot, and I still don’t have any answers. I still don’t have a diagnosis, apart from wear and tear. One doctor even told me I had arthritis in my wrist because I was overweight! I don’t sit on my bloody wrist!

Something systemic started the day I had that shot.

That shot cost me my health, days/weeks/months of my children’s lives, and it cost me my business. I had a successful therapy practice until then, but from that day on I was too sick to work.

I am not saying this is a usual response to the vaccination – in fact, research has shown me that it is rare but that it does happen. I would never advise anyone else on whether they should have it or not. As I said, the flu is a dreadful illness, and can in some cases be fatal. And that is what I was trying to save myself from.

For the record, I am pro-vaccine. I always had my children vaccinated. I believe wholeheartedly in herd-immunity. Which is why I had the flu shot.

Sadly, that 5 seconds changed my life forever.

 

 

 

 

 

 

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6 thoughts on “Why I will NEVER have a flu jab again

  1. Violet says:

    I had a sudden onset of severe RA within 48 hours of having a tetanus shot. I couldn’t get out of bed for three years, and even now, 10 years later, am totally crippled.

    My dad had sudden onset of graves disease within 48 hours of a flu vaccine…he nearly died from a thyroid storm.

    My cousin had a sudden onset of MS within 48 hours of a flu shot…she’s been wheelchair bound ever since.

    Doctors dismiss all of this, saying it’s coincidence. After great anxiety and extensive research, I did go ahead and get my child vaccinated. Shortly thereafter he was diagnosed with autism, but extensive evidence shows autism isn’t related to vaccines, so who knows. Maybe it is all coincidence, but vaccines and my family sure aren’t a good mix. I’ll never get another one.

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  2. ailishdelaney says:

    I’m so sorry to hear that Violet. Nobody takes the claims seriously – I, too, was dismissed by the GPs I saw, they said it was just coincidence, and that it was just ‘general wear and tear’. But how does a healthy 40 something woman go from having no problems to being unable to walk in such a short space of time? My spine is literally crumbling. I also did research, and found that there were documented cases of the flu jab causing narcolepsy, ‘the sleeping disease’…within 48 hours of the jab I was sleeping 18 hours a day, I literally couldn’t keep my eyes open. It wasn’t tiredness, it was utter exhaustion. I’m actually having a relapse now – it took me 40 minutes to walk to the local shop a couple of days ago, a walk which normally takes 2 minutes.
    Mine have dismissed it as OA, however I am convinced it is an inflammatory arthritis, like RA or more likely ankylosing spondylitis as it is primarily affecting my lower back and SI joints. But my blood tests came back as negative, and when I asked…begged…them to consider a sero negative type they got angry.
    So all I can do is take industrial strength painkillers and ‘get on with it’. And all the while this ‘thing’ is causing more and more damage.
    I am lucky that my children were vaccinated before it hit the headlines – I didn’t have the worry of whether to vaccinate them or not, I just did it and thankfully they are all fine. With hindsight I probably still would have them vaccinated, although never the flu shot. I wouldn’t wish this on my worst enemy.
    You did what you felt was right Violet. You’ll never know if your son’s autism was caused by the vaccine, as you say research says not. We can only do what we feel is best with the information we are given at the time.
    I wish you and your family a happy, pain free, Christmas and New Year.

    Ailish xx

    Liked by 1 person

  3. Violet says:

    My RA happened to be seropositive, but the diagnostic criteria for seronegative can be a bit more strict. My clinic (mayo clinic, which I detest) requires you to have a specific type of bone erosion visible on Xray or MRI before they’ll give the official diagnosis of seronegative RA or AS. Sometimes you just have to wait until more evidence of the disease shows up, but that can be *a lot* of suffering in the meantime.

    You get painkillers? I have diagnosed RA and have bone erosions all over the place, but I can’t get a f’ing painkiller to save my life. I didn’t respond to any of the treatments for the disease, so it rages out of control, and Mayo refuses to treat any kind of chronic pain with narcotics. To add insult to injury I was also refused disability despite my docs supporting me.

    As for vaccines, I just don’t know what to think. I’m a former infection control RN and cannot deny vaccines have been a saving grace for humanity, but I don’t like how doctors think they know everything about them. There is so much we don’t know about the immune system; it’s ridiculous to think there couldn’t be serious complications to vaccines even if we don’t have the research yet. Would I vaccinate my son again? I don’t know, but there surely seems to be some people who react very badly to vaccines (for whatever reasons). Certainly I’ll never let myself or my son get an “unnecessary” vaccine, like the flu shot.

    Keep up the good fight and hang in there, girl. In time your disease may manifest in a more classic way which will help get you a proper diagnosis. Inflammatory arthritis and autoimmune disorders are sneaky and can be a tricky bitches to diagnose. I’m so sorry for your suffering…it’s a tough row to hoe for sure.

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    • ailishdelaney says:

      I can’t believe you don’t get any meds to control the disease! The more RA is allowed to go uncontrolled the more damage it will do – that’s crazy. I’m so sorry. I’m in the UK, so I guess we do things differently. I have industrial strength painkillers on a repeat prescription, at the moment I am getting 100 a month. Sometimes I can do without them, but at the moment I am throwing them back like smarties just to be able to function. I am so sorry you have nothing to ease the pain. I don’t think anyone can appreciate how tiring it is to be living with chronic pain, and how much it gets you down. As for me, when I had an MRI it did show erosion of the SI joint (A classic sign of AS) but still they wouldn’t entertain it, they said I *might* have got that from pregnancy. As you say, maybe one day things will get to a stage where they will get me a proper diagnosis, but until then…well, we’re left to our own devices. x

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      • Violet says:

        To clarify, I did have access to the first 3 tiers of drugs used to treat RA…they just didn’t work for me. I could not afford the next tier of medication (Rituxan) because it cost $80,000 a year and my insurance wouldn’t cover it…thus I haven’t been on meds now for about 8 years.

        As far as painkillers here, doctors won’t prescribe them because they are concerned for addiction and suicide by overdose. So they just let us suffer. The problem with their thinking is that guns are readily available in the US…so now chronic pain patients are blowing their heads off instead. Our healthcare is so screwed up here it’s a tragedy. I am thankful you have the option to use narcotics to make your life more tolerable.

        You have a bone erosion and they still won’t diagnose you? I mean, how do you get that kind of erosion from *pregnancy*? It is my opinion that docs are reluctant to diagnose these diseases because the treatments are dangerous can kill you. I took the same meds they would put you on for AS, and I ended up nearly dead a few times due to immune suppression. I got UTIs that spread to the kidneys in a day, colds that turned into pneumonia in two days, sinus and ear infections that were starting to spread to my brain. I was constantly ill while on these drugs, and they did NOTHING to help my pain and mobility issues. Another issue: generally you’ll start to hit organ failure after about 10 years on these drugs as well. The immune modulating drugs are the most dangerous medicine humans possess.

        In the end, getting diagnosed is helpful for some reasons, but then you have to make very serious decisions about what kind of treatment you will subject yourself to, and if you have children, are you willing to risk death for it. It’s all just a shitload of difficult decisions and suffering. Now there are some people who take those drugs, have no problems with them, and their disease responds well…but that is not the norm.

        Have a hug, and know you are not alone. This life is hard. ❤

        Like

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