From the start, I haven’t wanted this blog to focus solely on my health. I will definitely be mentioning it from time to time, as it’s obviously my everyday reality. But I also have a lot of interests and passions of my own, which were there long before my chronic illnesses started. I fully intend to be honest about how being unwell affects me, and will not sugarcoat anything, but I will also be discussing more “superficial” topics like makeup, beauty, skincare and food.
As awareness and understanding around chronic illnesses is massively lacking, I want to take this chance to explain what I have, and how it affects me. This way, you will understand when I can’t do certain things, post daily, or don’t leave the house for days on end.
Technically, I have 4 chronic illnesses (chronic meaning of long duration, may not be “solved”). I have been diagnosed with IBS, TMJ, ME and Fibromyalgia. If you would like to know more about the conditions generally, please click on any of the condition names for a wiki link giving fuller details.
I have had IBS since I was around 16 and although it is unpleasant, I would say mine is generally fairly mild and only flares up on occasion. I will probably not be making mention of this condition as it is more in the background.
I was diagnosed with TMJ (temporomandibular joint disorder) around 5/6 years ago. Basically around my teenage years, it turns out one of my left jaw bones grew longer than my right one. This causes strain on the joint, a lot of pain and disalignment. If you ever see a photo of me unsmiling, you will see that my face is completely lopsided! My TMJ flares up and down. It can cause immense pain and headaches, but sometimes responds well to botox injections (to relax the muscles). I have had times where I have stuck to a liquid/soft diet as it hurts so much, and times where it’s just in the background. I see a consultant every 3 months to keep on top of it, but the only real option left is surgery, which I am very nervous about looking into. It doesn’t have the best success rate and could even cause the condition to become worse!
Now come the two biggies. I was diagnosed with ME (Myalgic Encephalomyelitis) just after getting married, in September 2013. I was later also diagnosed with Fibromyalgia. I probably had it the whole time I had the ME, but it took longer to be diagnosed. These two conditions impact hugely on my life, and in truth have changed it and turned it upside down! I have gone from being an active gym go-er and roller derby player with a full-time management job and an active social life to…. a girl who struggles to get out of bed most days, has a medical intolerance to exertion (ie exercise) and is on long-term sick leave from work. Now luckily for me, I have a great support system. My husband and Mum do a lot for me, and my friends and family are supportive and understanding. I haven’t become depressed (like I know a lot of sufferers do, unsurprisingly!) but there have been a lot of tears, feelings of grief for my old life, and feelings of “life’s not fair”!
Sadly, there is no “cure” or even any registered treatment for ME. Most of us sufferers are guinea pigs for various treatments including pacing techniques, counselling, LOTS of rest and a multitude of medications and painkillers. Not a day goes by without me taking painkillers, and I am various medications 3x a day just to keep things ticking over.
The biggest difficulty, and misunderstood factor of both ME and fibromyalgia, is that they are fluctuating conditions. This means that (personally speaking) on Monday I may be bed-bound, unable to get my own drink, prepare food, stand up for a small amount of time, may be in excruciating pain and have “brain fog” (inability to concentrate or think clearly). On Tuesday or Wednesday, I may be up and dressed, preparing a simple meal and have my pain more under control. There is just no predicting it!
It is also fluctuating in a different sense – for example my ME has always been difficult and I haven’t had good attendance at work due to sickness. However I had some basic function of getting up most days, preparing some meals, keeping in contact with friends etc. Since late December I have had a huge “crash” (period of worsening). On Christmas Day, I was too unwell to open my own presents or get up the stairs on my own. Since then, I have been off sick for most of the year, have been mostly bedbound and have had most of the cooking and general day to day maintenance done for me by my husband.
My Mum and a close friend have even been roped into hair-washing as I often don’t have the energy and strength to hold my arms up long enough. This leads to misunderstanding and perhaps resentment from some people – it confuses them that you may be unable to go to work all week, but then may be able to nip to the shop or go out for a meal a few days later. It can lead to people wondering if you’re “faking it”. This is my biggest concern, as I will always do my best each day. If I can go to work, I will go to work. If I can see friends, I will. It’s just that most of the time I can’t. So you can’t blame me for making the most of better days and trying to fit it all in (I’m guilty of this, but have got much better at pacing!) So if you know someone or meet someone with a chronic illness of any kind, please remember that they may have been okay yesterday, but they may be struggling today. They may “look fine” (I get that as I don’t usually go out of the house without makeup, which covers up my paleness and massive dark under-eye circles!) But they probably don’t feel “fine”. They may well feel as though they have been run over by a truck. Which then reversed…!
I will probably refer to the term “spoonie” frequently. This is a term used by the (amazing and spirited!) chronic illness community. It is derived from the “spoon theory” which you can read here.
So this page will just sit here for anyone who wants to understand more about my chronic illnesses and how they affect me. Thanks for reading!