For the last three months my body has basically been giving up. It started slowly: I noticed I was feeling really tired during my daughter’s nap time and I’d have to lie down rather than study like I usually do. Gradually it started being all day on my days off work; I started parenting from a horizontal position, barely able to keep my eyes open. After a month of being completely wiped out on my days off, it crept into work days too. One morning I was so exhausted and brain-dead that I was in tears by 8am and stood up in front of a class of 30 teenagers (I’m a teacher) and just went completely blank and said I didn’t know what I was doing: my mind just wasn’t making the usual connections.
Seeing the state I was in, my boss sent me home and I didn’t go back for a month. I went from someone who was always on the go: working, parenting, studying, playing netball, socialising and doing whatever I could to avoid just doing nothing, to someone who barely moved from the sofa. I’ve never been good at relaxing; I get so bored and I thrive on being busy, but suddenly I was so fatigued that even changing the channel felt like too much effort.
A trip to the doctor revealed that my iron levels were that of a dead person making me severely anaemic. I also got told that I had an underactive thyroid and that I’d have to start taking medication immediately and I’d be on it for the rest of my life. I took this information with a pinch of salt and thought a couple of weeks of taking iron three times a day, as well as my thyroid meds, and I’d be right as rain.
Unfortunately I was wrong. When I started researching my thyroid condition, I realised that it was much more serious than I’d originally thought; in fact, it’s classed as a chronic illness. Turns out it’s responsible for over 300 symptoms and can severely impact day-to-day life. Aside from the crippling fatigue and the ‘brain fog’ that was making me so stupid that I spelt Christmas wrong at work, tried to use a fork for soup and started forgetting to wash the conditioner out of my hair, it also was seemingly responsible for a whole host of other symptoms I was experiencing. Random things like the fact that in the past year I’d gone from someone who was always hot to someone who would sit inside in a jumper, cardigan and blanket with the central heating on and the fact that my skin was so dry that my hands were always cracking and bleeding, were apparently all part and parcel of the same disease. My research revealed that the thyroid is responsible for every process in the body and the fact that mine was underperforming meant that everything was slowing down; the most common symptoms being extreme fatigue, weight gain and depression.
The prognosis was not good and the more I read about it, the more hopeless I became. Turns out that most doctors actually know very little about the problem and the medication that they send patients away with is actually effective for very few people. Even for those people whom it does work, it can take a good six months or longer to get to optimum levels and feel well and then the levels fluctuate. Everyday I’d get hundreds of Facebook notifications from the support groups I’d joined with people complaining about the horrendous symptoms they were having with this life-long condition and how they were having to seek private medical support and do things like buy pig hormones online in a desperate attempt to feel better.
I got into a really dark place. I started spending my afternoons crying on the sofa feeling like I had absolutely no quality of life. As it’s a disease that isn’t well understood by medical professionals, or those who’ve never experienced it, I started to feel more and more alone. The fact that it’s an invisible disease and from the outside I looked completely normal made it even more difficult. I found that I’d started having energy for a couple of hours a day (and started working mornings as I felt so guilty about being off) but I’d then need to rest for six hours to recover from it, but as most people wouldn’t see that part, I felt like people would see me and think I was fine and wouldn’t know what I was complaining about. Feeling like I couldn’t talk to anyone as I thought no one would understand just made me feel worse.
One lonely afternoon six weeks after I’d been diagnosed, I contacted a local counsellor just so I would have someone to talk to. I wouldn’t say it was particularly helpful as she didn’t know anything about the illness I had, but she made me see that what had happened to me was actually pretty major and I was experiencing a huge sense of loss for my former life and extreme anxiety about what the future would hold. She made me see that if I wanted people to understand, I had to make them understand and open up to them.
I needed to take back some control. I read a book entitled ‘Be Your Own Thyroid Advocate’ by Rachel Hill which was a game-changer in many ways. Knowledge is power and by educating myself about my disease, I realised that there was hope that I’d get better but it is likely to be a long journey and if I wanted to get better I’d have to take responsibility for that myself.
She empowered me to arrange an appointment with a specialist, get my own blood tests online and demand that I change the brand of the medication I was taking and increase my dose. I started going to the doctors on a weekly basis with a whole host of questions. Why had this suddenly happened to me? What had caused it? Why were my iron levels so low? And why, despite taking iron tablets for two months, were my levels going down? I wasn’t going to accept not being well for the rest of my life: I had to fight for answers.
In trying to explain why my body seemingly wasn’t absorbing any vitamins (I’d become deficient in vitamin D and B12 by that point too), one doctor mentioned coeliac disease. Something immediately clicked. I’d always known in the back of my mind that something wasn’t right with my gut. In fact, my stomach hadn’t been the same since 2008 when I contracted food poisoning from Frankie and Benny’s. For years, eating pasta had made me throw up and after being a Special K addict, I’d had to give that up as I was having crippling stomach pains by lunch time every day. I’d been to the doctor who’d diagnosed IBS and gave me a leaflet about cutting out FODMAPs. Eliminating breakfast cereal, cereal bars and apples from my morning routine seemed to cure the daily stomach pain but even since then eating always makes me incredibly bloated and I can feel my stomach churning afterwards and I still often get agonising stomach pains, just not every day. Also, without being too graphic, having the shits for a decade had become normality.
When the test came back positive, I wasn’t surprised. In fact, it seemed to be the missing piece of the puzzle. I have to have a biopsy to triple check but the doctor was pretty adamant that I’ve got it. I’ve also got Hashimoto’s disease, which is another auto-immune disease (like coeliac), so my immune system is attacking my thyroid and my gut so it’s no wonder that I’ve been sofa-bound for months.
So, in terms of what the future is going to look like, it looks like it’ll be gluten-free. As a cake-addict who only really knows how to be ‘healthy’ by eating rice cakes and oatcakes, this is going to be tough. I always thought those people who asked for allergen menus in restaurants were just drama queens but now I know: I’m going to be one of those annoying folk too. No one is going to ask me around for dinner again and, even if they did, I’m going to be interrogating people about the stock cubes they’re using before I even think about eating their food. It’s going to be a whole new world.
As I have to continue eating gluten until the biopsy, I’ve got a bit of time to get used to it. I had a ceremonious sausage and egg McMuffin to say goodbye earlier and last night I ate a stuffed-crust pizza and the pudding I’d been saving since Christmas in a bid to make myself feel so awful I’d be desperate to tell gluten to go do one.
The good news is it’s given me hope. This is something I can do to take control of my body again and hopefully it will heel. I’ve read that in time my gut will recover from the years of abuse and then I will start absorbing vitamins again. In the meantime, I have to do everything I can do to get better and to look after my body and put good stuff into it in the hope that it will start working again.
I’m hopeful that in time I can work full days again, exercise regularly and actually look forward to the future. I want to be able to make plans and not have to worry about how awful I will feel or factor in six hours of rest-time to recover. I’m hopeful that by the end of February I’ll be able to start seeing friends again or have the energy to visit relatives and actually contemplate going to bed after 9.30pm now and again. Maybe, in the not too distant future, I’ll be able to complete my masters that I’m two years into but haven’t been able to even think about for three months. The fact that I’m even able to write this is progress as this is the first time in weeks I’ve been able to type anything without giving up after a paragraph.
So, that’s it then, the beginning of a new way of life and hopefully recovery. Follow me on my journey back to health and please feel free to send gluten-free cake recommendations my way!