Today is quite a poignant one for me. Just a few days ago I found out that the Rheumatologist had diagnosed me with Fibromyalgia/CFS, after many months of tests and appointments with a wide variety of specialists to try and figure out why I am so ill. So when I discovered that 12th May is an Awareness Day for both of these conditions, I knew I had to come on here and write a post about it.
Since 1992, 12th May has been designated as “International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)“, which includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Fibromyalgia (FM). This means that 12th May 2017 is actually the 25th Anniversary of this Awareness Day, and I have to say that I’m grateful for that, because it means that my diagnosis this year comes with a lot more understanding than the diagnosis my mum received 20 years ago.
You see, the diagnosis may be new to me, but I grew up knowing just enough about ME/CFS to have an appreciation of the impact it can have on the lives of those who suffer from it, and their families. I remember my mum, who was a childminder at the time of her diagnosis, giving up work as it was just too much. I also remember accompanying my dad on the weekly grocery shop to save my mum having to deal with the supermarket for a while. And in the years since, I have watched as more and more health issues have complicated her life.
And yet, despite seeing a close member of my family dealing with ME, and managing other chronic illnesses of my own (namely Hypermobility and Endometriosis), it wasn’t until I began to suffer from the exact same symptoms myself that I truly realised just how debilitating these conditions can be. It’s hard to describe just what it feels like, and my understanding is that it is slightly different for everybody, but I want to try and share a little bit about what it feels like to me and the impact it has had on my life already.
It’s been quite challenging for me to pinpoint the symptoms, not because they aren’t severe but because they are similar to symptoms I have experienced in the past due to other conditions. However, the following have all become much worse than they have ever been, or are completely new to me, and it is these which I find the most distressing and debilitating:
Extreme fatigue and exhaustion – since developing this symptom I am aware that I completely underestimated exactly how bad it was for people with ME/CFS (sorry mum!) This goes far beyond the feeling of exhaustion you associate with having overexerted yourself or the fatigue that comes from lack of sleep. This is an overwhelming and all-encompassing lethargy that fills your entire body.
When it hits me (and it often hits me without warning!) I find myself completely reliant on those around me to pick up the pieces and allow me to drop in bed. Even sitting in bed feels like it takes too much effort, and it is so difficult to concentrate I find it hard to read or watch TV or even communicate some days. And let’s not talk about the days I skip lunch because I simply haven’t got the energy to make myself something to eat (yes, it really can be that bad!)
Brain fog – following on from the extreme fatigue, sometimes I simply cannot clear my head, and the simplest things escape me. I forget to take my medication, and then wonder why I am in pain or my stomach is so upset. The only thing I can liken it to is the effect of severe sleep deprivation during the early days of parenthood, when you’re so exhausted that everything seems to take so much more concentration to make sure you do it right.
You could ask me a question and I might not answer for several minutes, because it takes that long for me to process what you’ve asked and then formulate an answer. And there’s absolutely no point in asking me to make a decision on days when the brain fog hits, just don’t even try.
Joint and muscle pain – this has been quite a tough one for me to connect to the Fibromyalgia/CFS to be honest, because I simply assumed the increased pain was due to my Hypermobility. But I recently realised that it goes beyond that. Sure, my hips kept trying to pop out for a while, but several months with the physio helped to relieve that a lot. But despite increased core strength exercises, I still suffer from daily pain in my hips, pelvis, knees, ankles, back, neck… not usually all at once, but sometimes it happens.
Today is particularly bad – my ribs feel bruised; my pelvis is sore; my knees, ankles, wrists, and elbows all ache; and my forearms hurt where they are resting on the edge of the table as I type… just a small amount of pressure which would never have bothered me in the past.
Migraines, dizziness, and vertigo – again, these are things I have experienced in the past at one time or another, but this past year they have increased in both severity and frequency. Just before Christmas last year I had a six day migraine, and in recent months I have discovered that I sometimes have all the symptoms of a migraine (sensitivity to stimuli like light and sound, an out-of-body-feeling, etc) without the pounding headache, which I have never experienced before and which is very disconcerting!
Some nights I cannot lay down in bed, despite being exhausted, because I’m just too dizzy. Other times, it comes on when I am looking at a computer monitor, mobile phone screen, or even after eating my evening meal. When it happens I simply have no option but to rest in a darkened room as soon as possible until it passes, which can sometimes be several hours.
Nausea – okay, so this one I have suffered from to varying degrees for years due to both IBS and Endometriosis. But never before have I suffered from nausea so frequently, just because I am tired or in pain. In fact it took me quite some time to make the connection between my pain and the nausea, and it was only because I happened to take some painkillers one day and realised my nausea practically disappeared as soon as the paracetamol kicked in. I often underestimate the effect that the pain has on me, and this really taught me just how much my body is struggling to deal with everything right now.
Inability to regulate temperature – one of the first signs I had that something was really wrong, was the fact that I would wear 6 layers to work (a long sleeved thermal vest, a second vest, a t-shirt, 2 cardigans, and a fleece jacket) and I would still be so cold I was physically in pain! Then, when the summer came around I could barely cope with the heat – whilst everyone else was sweating through the heatwave, my body didn’t seem to be doing anything to cool me down, and I relied heavily on the fan to keep me as comfortable as possible.
the impact this has on my life
Anxiety – this is a huge one for me, because the unpredictability of my illness means that I find myself getting anxious over things which would previously have excited me. For instance, I had a major panic attack last summer, because Little Man and I were due to go to London for the Cosmic Kids Fan Event at YouTube. I lay in bed, heart racing, cold sweat pouring off me, as I thought about getting us both down to London, across the city using the Tube, and to where we needed to be on time. I have travelled so much over the years with public transport and it has never made me panic like that before, but a part of me was suddenly aware of how much I was struggling and how I couldn’t guarantee I would be well enough to cope with such a busy day, and that terrified me. We managed it in the end and had a great day, but it took so much out of me.
That same panic hits me regularly as I realise this same unpredictability of my illness (and the severity of debility when it is at its worse) is preventing me from working and providing stability for my family. It’s very difficult to talk yourself out of panic when you realise your anxiety has some logic to it.
Unemployment (and financial instability) – again, this one is huge. My part-time employment ended in January this year, after 6 months of continuous sick leave. At that point Fibromyalgia and CFS had both been mentioned but I hadn’t been officially diagnosed. Even so, it was clear I wouldn’t be well enough to continue working in my previous employment.
I had hoped to make things work as a freelance online media specialist, but unfortunately even a few hours a week has been proving too difficult to manage. I still do very ad hoc work for a couple of clients, but this is 2-3 hours per week total, and nowhere near enough to provide for my family. Just this week I have had to make multiple claims for increased financial support, and there is nothing worse than feeling that a) you cannot provide for yourself and b) even when you try claiming support, you’re not even eligible for half of it anyway. Needless to say, this is a huge impact my illness has on both me and my family.
Reduced activity with the family and friends – this last one tears me apart. When we first moved to our current home, I did lots of different things with Little Man around the city over the summer holidays. Last year the summer holidays were spent mostly with me resting in bed and him watching YouTube on his tab next to me. This year I expect it will be very similar – I simply do not have the energy to do things with him, and that breaks my heart.
Equally, I find I cannot plan days out with friends or even a catch up over coffee, as I am just too ill to manage it. Last week I had to cancel meeting two friends for coffee due to a stomach bug, and the resulting time required to recover from that meant I had to cancel a lunch trip with my Grandma and others from church this week too. Just a couple of months ago I also had to cancel singing in the choir for the church panto, as I was simply too sick to cope with multiple performances.
Most nights you can find me resting in bed, watching Netflix or reading a book, because I simply do not have the energy to stay up any longer… I go to bed before my 5 year old! And as much as he likes simply being with me, sometimes even trying to keep up with his conversation is hard work when I am so tired.
but my story is just one of many…
As you can see, Fibromyalgia/CFS has had a massive impact on my life, and affects my family too. And my story is far from alone. I have been truly blessed over the past year to have found a wonderfully supportive community over on instagram, with people dealing with a wide variety of chronic health conditions, including ME/CFS and Fibromyalgia. I wish I could list them all on here for you, but that really would be a mammoth task… instead I am going to list just a few to help get you started, if you’re interested in learning more.
mummyneversleeps (whose husband is a sufferer)
If you search using hashtags such as #may12, #mecfs, #myalgicencephalitis, #chronicfatigue, #fibromyalgia, #spoonie, and #butyoudontlooksick, you will find so many more accounts to follow!
You can also find more information about these two conditions at the following places: