This is me.
Three years ago, my consultant in London said the f-word…that’s right, fibromyalgia.
For the last few years I have been in constant pain and I find it really hard to focus on anything other than finding pain relief or finding a new treatment that might actually make a difference.
Everyone in my life knows that I have body pain and headaches. Some people think its just my back.
Even though we have all had pain and sore body parts, the fact is that anyone who hasn’t experienced non-stop chronic widespread pain for days, weeks, months or years really has no idea what this experience has been like.
I have felt that writing about it would end up being a whiny piece of writing about “Boohoo. Poor me – I hurt.” Or that the intention behind writing it would be to seek sympathy. I also worry that I don’t know how to fully explain my experience in a short and concise way. I worried that it would get boring and repetitive and too long to read.
I now think it is something that I need to do. I think I need to write about the physical pain and its emotional toll.
I thought the easiest way to explain my experience would be to go through a typical 24 hours in a day in the life of me.
It’s 9 p.m. and I’m laying on the sofa with my fingers pressing into my neck and the base of my skull, trying to recreate what relieving treatment I have received. Trying to relieve some of the throbbing in my neck and sharp pounding in my head. I’ve somehow convinced myself that I have to stay up until 10 p.m. When 10 finally comes, I get ready for bed, and collapse into what I’m hoping will be the most comfortable place in the house. It takes me several minutes and several attempts to reposition myself. Does my neck feel straight and aligned with my spine? If I move slightly to the right will the stabbing pain in my thigh stop? If I roll over will that relieve some of the pain on that hip?
Unfortunately, part of my illness is over-activity in my brain. Hello neurons, can you stop firing now please? I just can’t go to sleep, or if I do, I don’t reach a state of deep sleep, which is where rest and repair happens.
Eventually, The pressure of my own body against the mattress is causing pain that I can no longer tolerate. So I get up, go to the bathroom, stretch a bit, make a cup of tea, read, watch TV from a distance. I go back to bed about 4 a.m. and start the process again. Eventually I drift in and out of a light sleep, never getting adequate rest. I wake up several times and reposition my body trying to find the least painful position. Before I know it, the kids are up for school and I can’t be laying down anymore. The pain has built up and my body is screaming at me.
I know that up will be better. So I pull myself out of bed to begin my day. Every step towards the bathroom is painful because my body feels like it was beaten with a sledge hammer the day before.
By the time I get to the kitchen, most of the stiffness is gone. My head is often less painful. And I’m left with that general yucky feeling you get when you have flu. I have sharp aches in many different places, hips, knees, elbows, hands, neck, lower back, ankles even my teeth and toes. The stabbing in my right thigh makes moving difficult. If I have to drive today it will hurt to use the pedals, lift the hand break and checking my blind spots before I turn, sending searing pain through my neck into my shoulders.
I’m exhausted and it’s only 10 a.m. I’d give anything to be at work.
Throughout the day I take pauses to stretch, to rest, to do deep breathing, to hydrate, to find a position that is reasonable and for making my pain level tolerable. I have to remember to be conscious of the position of my body and tension in my muscles at all times. My head has to be sitting in line with my spine and facing forward. I can’t look up, down, or to the sides for any extended time period or I will regret it greatly later. By lunch time the fatigue is horrendous, I have no energy to move or lift my arms, stand up or even make a sandwich.
It’s not that I’m just “tired,” it’s a feeling of sheer weakness, like having permanent flu. My muscles and bones just won’t cooperate with what I need them to do and It feels like there is an earthquake behind my eyes. My whole body hurts. I’m having muscle spasms in different places. And suddenly it feels like there is too much stimuli. I can’t focus, I feel dizzy and want it dark and quiet. My jaw is aching and I realize I stopped paying attention and I was clenching my teeth while trying to ignore the rest of my body. My eyes are burning and itchy again, but now they are watering, too. And I can’t think of what it was I was supposed to be doing. All morning I had been forgetting words or misusing words, mostly because my brain was too busy processing pain signals and being in a constant state of stress response.
Despite having “slept” for a few hours the night before, I am overcome with a sudden and extreme fatigue attack. My body just shuts down. My eyelids want to close. I yawn and yawn and I’m convinced that I can’t make it to the end of the day.
If I do manage to find a comfortable spot, I lay down for 15 minutes, but my body decides it doesn’t want to cooperate with a rest after all. My legs start to feel weird…at first it feels like some thing is crawling around inside my legs. Up and down from feet to thighs and both legs start jumping (restless leg syndrome) I give in and take more medication and I pass out, finally asleep.
People say to me, “How can you manage to sleep sometimes and not others?” or, “If you sleep in the day you won’t sleep at night.” The answer is there is no pattern. I just have to grab any sleep that my body will allow. I gave up a long time ago trying to stay awake all day expecting to sleep longer at night. This does not happen. I have before gone two days and two nights with no sleep at all. You would think that is physically impossible!
I get so run down. My immune system ends up very low and I pick up any infection, usually in my kidneys, liver, ulcers, throat and ears, or shingles.
After finally managing a nap I wake up and feel rubbish.
Guilt is a word I feel every single day so I try and do some chores…change washing in machine, tidy up, put some clean washing away. Once again, chronic fatigue has attacked. My body temperature has risen and I need to sit by an open door for fresh air and try to cool down. I then sit down with my trusty friend the fan.
The kids come home and it’s as much as I can do to focus on our conversations, answer their questions and remember what they have on after school today…rugby, netball, etc.
I have no appetite and cannot face eating a meal. If I do I never know if I am able to keep it down or have an upset tummy. It’s a vicious circle of needing to line my stomach to take important medication.
It’s 9 p.m. again. And I’m curled up on the sofa with a heating pad and my blanket. My mood is low and I’m crying. Depression and anxiety is a huge part of my life now so I make a list of the things that I am grateful for: love and health of my husband and three teenage children, family, companionship of my dog, friendship, laughter, that my children are happy, busy, active and love their education and sport, that my mum is alive after beating cancer, Malibu and coke, Christmas and so much more.
Despite the aches and pains, despite my memory going wonky, despite my “good days” where the pain is there but tolerable and I manage to get out and about – I think the hardest thing to deal with is not being able to live my life the way I want to. Not being able to do all the things I did before without planning in rest and recovery time. Not being able to do it all in one day. Not being able to go out with friends whenever I want to. Letting people down when I said I would do something. I miss the very busy wife, mum, daughter, sister and friend I used to be. Knowing that this is probably lifelong. That I have to make big changes to my approach to life. And worrying constantly that I come across as an irresponsible, unreliable, lazy flake who doesn’t follow through with commitments.
That’s a typical day for me, but I want to end with something positive. I want to be the person who people say, “She did that in spite of…” but it’s not like that. I don’t have anything positive to say about fibromyalgia and chronic fatigue syndrome. All I can do is take care of myself, concentrate on my family and enjoy the small moments like my husband making me the best cup of tea every morning. Despite of the daily struggle I have a lot to be grateful for!