This is always such a fun topic, however, as it is probably going to come up in most of my entries I think it’s best to give you all a brief breakdown of what health conditions I have. As of October 2018 I’m at the grand total of 7 illnesses. I’m going to start by saying that I’ve never been one for being ashamed of my health conditions, or believing that I shouldn’t speak about them. I am open about them, they are a big part of who I am whether I like it or not, and so I expect others to deal with them – after all, it’s me that has to deal with them 24/7. I am particularly outspoken about people being ignorant to invisible illnesses; the health conditions that give no physical sign.
Below you can read more about each individual condition and how they effect my every day life.
“Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities.” – ME Research UK
“Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.
M.E. is not “feeling tired.”
Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise (sometimes called ‘payback’).
Harvard University’s Dr Anthony Komaroff has described post-exertional malaise as “an illness within an illness.” ” – Action for ME
Also known as Chronic Fatigue Syndrome (CFS), I personally prefer to use the term ME as I find that too many people attribute the term ‘fatigue’ with simply being tired and do not comprehend the reality of what real fatigue feels like. If I say ‘CFS’ to them I get one reaction, where as if I say ‘ME’ I get a much graver serious response. A lot of the time people do not seem to realise that the two are in fact the same condition.
I first started to feel the symptoms of ME just after starting my Masters in Information and Library studies in September 2015. For me it presented itself as extremely sore – to the point of agonising pain – and swollen lymph nodes (glands) throughout my body. While with most infections or illnesses it is common for lymph nodes to become inflamed as your body fights off the infection, it usually only presents in one or two areas of the body such as your neck or under the arms. The fact that it was throughout my body and didn’t go away with several courses of anti-biotics was a bit of conundrum for my doctors. At this point while I was feeling lousy, as someone with an infection or virus would be, I wasn’t really showing any major signs of fatigue that pointed directly to ME.
I ended up going through months and months of tests which included some pretty scary things before getting carted off to the Infectious Diseases department. At first I met with a lovely female doctor who did a very thorough physical and verbal examination. Unfortunately, my return visit was extremely disappointing. Upon meeting with one of the male consultants I was told it was my weight and promptly shown the door. In tears I felt like I was not being taken seriously at all and that there was no hope for me. I was in the middle of my Masters, struggling through and no one was able to help me.
Thankfully I got a new GP at that point and she has been absolutely wonderful. She made me a promise to fix me and while I admit, I laughed and told her that might be a much bigger job than she could handle, she did help me. It still took a year and a half to get a diagnosis though. Eventually I was referred to the Center for Integrative Care in Glasgow and for the first time in my medical life I felt like someone in the NHS was on my side. The CIC is designed for people with multiple conditions, including those with fatigue. They recognised that swollen and sore lymph nodes is a symptom of ME and by this point I was also showing symptoms of fatigue as well. The pieces finally fit and a pending diagnosis of ME was given – why pending you ask? Unbeknown to me the consultant at Infectious Diseases had already recognised I had ME and had not told me. My poor GP had to go between two consultants to get one of them to give me an official diagnosis as they were squabbling over which department would give it; the CIC can only offer treatment it cannot offer diagnosis. Thankfully they were able to start treatment for me in the form of mindfulness CBT and physio while we waited for the mess to get sorted out.
It has now been another year and a half since I received my diagnosis and I am still recovering. I am now finally nearing the end of my recovery at least, but it has taken that long to get to the stage that I can even say that. I tried to complete my dissertation multiple times during that period and I found that I couldn’t write it. I can no longer write thousands of words for an essay, or creative writing like I once used to. If I try to and push too hard I give myself migraines. Everything is a balancing act now; a good day is followed by a bad day, a ‘bust’ day where I pay for overdoing it. If I want to go out for a day then I need to rest before and be aware that the days after will be spent in pain. So much of my life has had to change. I thought that my life was limited before with 6 health conditions and then ME came along and knocked me completely off my feet.
There isn’t really any treatment for it either. It’s all about managing the symptoms. I already take medication for my other conditions and for pain so it has been a case of tweaking a lot of things to get a balance. The best thing for me has been Mindfulness. I cannot praise this enough. It has not just helped with my fatigue; it’s helped my pain, my depression and my anxiety. It is so worthwhile doing.
“Hypermobility Syndrome is a connective tissue disorder. Symptoms often start in childhood and continue into adult life, they include; joints that are less stable and may dislocate, an increased tendency to sprains and strains, fatigue, long term pain and stretchy skin. They may experience difficult with gripping, writing, unlocking doors etc. and staying in one position for too long may increase their pain. Their mobility may be impaired.”
“Connective tissue proteins such as collagen give the body its intrinsic toughness. When they are differently formed, the results are mainly felt in the “moving parts” – the joints, muscles, tendons, ligaments – which are laxer and more fragile than is the case for most people. The result is joint laxity with hypermobility and with it comes vulnerability to the effects of injury.”
What does this all mean? Pain; lots and lots of pain. Usually it is controlled with my normal pain medication which I’m on 24/7. Occasionally I get a bad flare up, usually every 6 months or so, and it is agonizing. The last one took weeks and weeks to settle down and only with the help of morphine-like painkillers. Standing for long periods of time hurts, as does walking for more than five minutes without a break. I regularly pull or tear muscles/tendons, sprain muscles and walk into objects. I bruise very easily and I’m frequently covered in them.
I am very fortunate to have found an amazing physiotherapist at The Physio Centres in Glasgow. After 8 years of pain, and no long term help from NHS physios, I came out of my first appointment pain free. I don’t think I can remember a time prior to then that I had felt like that. Using a mixture of pilates and releasing techniques she has helped me build my body up and make progress.
Hypermobility Syndrome is the biggest pain in my ass, however, that is only one reason why it gets a section devoted to itself and the others get lumped together here. The other reasons are that the rest of these at least one or two people have heard of before, and I’m not too keen to talk about them as much as they’re more of a personal nature.
I have asthma although it is only mild, it tends more to be a bother during the hayfever or when I’m ill. I tend to get ill more than most people, and when I catch a cold it totally floors me. Thankfully I avoid the flu by having the flu vaccine every autumn. Then there is rhinitis which is the inflammation of the nasal passage. So sinus pain, constant pressure and a running nose.
I also suffer from migraines, which tend to pop up whenever they feel like it. I’m currently working out with my doctor a decent balance of medication to properly control them. On top of that I have irritable bowel syndrome which is not fun, and other than ME and hypermobility syndrome this causes me the most hassle.
Lastly I suffer from depression, which considering all of the above isn’t really that much of a surprise, but it took me a while to be able to look at it that way. It’s something that is always going to be with me, some days are easier than others, while some I’m constantly fighting a never-ending battle. I’ve had counselling over the years and I’m on medication for it, so it is under control.
So there you go, a run down on what health conditions I live with every day. I hope that this helps you to understand why I chose to write about it, and why it will feature heavily in this blog.