A new normal: learning to live with chronic illness

I can’t pinpoint when it started. Of course everything changed when my son was born, and like every new mother I found myself exhausted and fighting through the brain fog to think straight and even hold a normal conversation. For months I felt very self-conscious in company, as though I had lost the power to converse quickly and smoothly, and was frustrated with myself for not being able to think clearly in everyday life. I’ve never been one to forget things or turn up late, or feel so unwell that I’d have to cancel last-minute, but suddenly these things were happening regularly. I even went out unknowingly one day with two different shoes on that didn’t match!

A post shared by Lindsey Parry (@arabiannotes) on But all of this is completely normal for new mothers (well, possibly not wearing odd shoes!), and talking to my friends, many of them were suffering similar experiences, and often told me they didn’t notice my perceived problems with conversation. Which I suppose is something, though I knew in myself my brain just wasn’t working the way it used to.

And I think there was a point when my son was around nine months or so when I started to feel better. I mean, I say I felt better, but I’m not really sure if things had improved or if I’d just adjusted to my new state. There was definitely a period where I didn’t notice it quite so much. But there were definitely still instances, I found myself increasingly anxious and uncomfortable in social situations, even one on ones, with a heightened fear and feeling that I just I wasn’t able to communicate or express myself clearly. Business meetings, phone calls and even meeting with friends became a source of anxiety.

It wasn’t until very recently, after the Christmas celebrations and rush had died down that I realised I was finding myself feeling permanently unwell and exhausted. I seemed to have non-stop ailments, just simple colds and the like for months, but these ailments affected me far more than they ever had previously. I was feeling more down and depressed than I’ve ever felt in my life. I didn’t want to go out or do anything, and more than this, some days I physically couldn’t do anything but rest and sleep. I just physically was not able to function. Everything became a battle and I even struggled to continue with the one thing I love, my writing. It slowly dawned on me that this wasn’t normal, that something, somewhere along the line had definitely changed. It wasn’t a normal for me, and surely with my son at the time approaching his third birthday I should have been feeling more normal again by then?! The hormonal imbalances and sleepless nights that come with a new-born had long since passed, but I began to realise that not only had I not returned to ‘normal’, but that actually things were getting worse. I was permanently exhausted, so exhausted all I could do was sleep all morning while my son was at nursery when I should have been working, despite having had a full night’s sleep the night before (bar the odd brief waking to help the toddler to the toilet).

And despite all of this, I somehow felt as though there wasn’t enough to go to the doctor with, and although I was struggling and suffering I wasn’t quite sure what to tell a doctor. That I’m constantly tired and feeling non-specifically crap ALL the time? It didn’t seem like enough, it didn’t feel like I had a tangible ailment I could describe and I felt I would be wasting a doctor’s time.

Recognising my ongoing struggle and that things were deteriorating, my husband started pushing me to go see a doctor, and I decided that I needed to, although I still felt uncomfortable with the idea, that I’d probably just be told to get a bit more sleep and get on with it. It wasn’t until I visited my gynaecologist regarding another issue, and linked with that she confirmed my husband’s suspicion and suggested I have my thyroid checked.

Finally I had my reason to go and see a doctor. Even if it came to nothing, I felt I now had something worthy of going to a doctor for, a reason to  explain my visit. And after an ultrasound of my thyroid, my doctor was able to tell me immediately on the spot that it was clear I had auto-immune thyroiditis. My own immune system is attacking and destroying my own thyroid function and after running blood tests, he was also able to tell me that into the bargain the auto-immune thyroiditis is causing hypothyroidism. So there it was, a double whammy causing all my problems.

It was a double-edged sword to find out. On one hand, it was a relief to know it wasn’t in my head, that I finally had a diagnosis I could deal with, but on the other hand I wasn’t exactly sure what it did mean going forward. It’s something that I will live with now for the rest of my life, it is a chronic illness I have to live with and there are changes I have to make to my lifestyle. I have to take medication daily now, and I will do for the rest of my life, along with regular blood tests to check my hormone levels and adjust medication as necessary. At this point in time this is all still pretty new to me, I’m still learning about it and getting to grips with it. It is something very common, and more so in women – around 20% of women are estimated to suffer from it, though many remain undiagnosed. It’s also particularly common to occur for unknown reasons after childbirth. It is something that can be managed by medication, though I’m in the early processes of this and so far I feel little difference, though I’m slowly starting to see indicators of change and hopefully in time the fog will lift. Will I ever get back to ‘my’ normal? That remains to be seen. Many people live with these conditions without any problems, but many others suffer in numerous different ways. It seems to be something people don’t know much about unless they suffer from it themselves, and being an ‘invisible disease’ it can be hard for people around you to understand which of course can make life challenging when you feel awful on the inside, all while looking pretty healthy on the outside.

I recently underwent a surgery to address just one of my symptoms that was affecting my life very badly,  so hopefully going forward that’s one less thing to worry about. Among a long list of symptoms that have been affecting my life, two of the worst that prevail include tiredness and forgetfulness. And while tiredness may not sound like much, when faced with chronic fatigue it’s no joke. As for the forgetfulness and brain fog, not being able to think clearly or remember basic things is perhaps the most difficult thing for me to come to terms with. I recently made lentil soup and forgot to put the lentils in. I know, it sounds bonkers! How do you make lentil soup and then sit and eat it without even noticing there are no lentils in it?! My omission randomly occurred to me in bed the next morning, completely out of the blue, though I’m sure there must be instances where the realisation never occurs. And it’s hard not to beat myself up for these most obvious of mistakes for the simple fact these things are not my kind of normal – or at least, they never used to be.

But it doesn’t have to be like this forever (I hope!), and though things aren’t going to change overnight, at least I’m learning and am on the road to improvement, finding a way to live with this – my new normal.

I can't pinpoint when it started but here I am, finding a way to live with my new normal: learning to live with chronic illness.

4 Comments

  • Sorry to read your news and I hope you and the medics get you stable sooner than later. I can readily sympathise with the tiredness aspect of your experience. I have a genetic blood condition – Haemochromatosis. One of the major symptoms is tiredness. In simple terms the body does not get rid of surplus iron [iron overload] through one’s normal functions for disposing of waste. As it can’t do that, it has to put the iron somewhere: first choice is your vital organs, affecting their function. Second choice is your joints, not necessarily a problem unless like me you suffer osteo-arthritis; it feeds on iron, speeding up the destruction. I now have two replacement hips and two replacement shoulders.
    There is no cure for the condition and the only treatment is removal of blood. The problem with that is the good stuff you need is taken along with the bad. Blood removal itself causes tiredness/lethargy so that problem is compounded. I once had 44 units of blood taken in 48 weeks; one morning I did fall asleep into my cornflakes.
    However, I have managed to control the condition through careful attention to diet and it is now two years since venesection was necessary. I do have to have blood tests every three months.
    So, chin up and I hope you soon begin to feel the benefits of the medication.
    Cuz. xxx

    • Thanks Stan. It’s all quite new so really just trying to get used to it and figure it all out, if that is even possible!
      Interesting to hear that you’ve had success controlling it through diet, it’s something many doctors say for my condition doesn’t make a difference but many more sufferers believe otherwise and have had success going gluten free etc. I suppose it will take some time to notice what makes it worse for me and under what circumstances I feel better, but indeed whether with medication or otherwise or a combination, I hope there is light at the end of the tunnel! Xx

  • Likewise and concur with Stan, I am currently in a similar boat regarding iron overload. The vampires at Raigmore will be emptying my arm on Friday, with another two to follow a fortnightly intervals. Mary and I can empathise re-colds, forgetfulness etc. Unfortunately, there is no known cure for anno domini, so we just keep soldiering on. One ray of comfort, Mary’s friend Ellen suffered badly due to thyroid problems, but with medication she was restored to health, and her normal sharp competence.
    Lesxx

    • Thanks Les. Wishing you both all the best with the treatment for iron overload. As for hypothyroidism, yes, the medication has a cumulative effect so here’s hoping things will improve with time. Xx

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