My nights and sleep patterns have changed dramatically in this past year and I am not at all happy about these changes. Perhaps some of you may identify and some of you may not, but I feel certain that sleep is a major struggle for many autoimmune sufferers out there. It is certainly a common discussion in the support groups.
It is 3 am as I write this and I am desperately tired and in pain.
This year my joint pain and nerve issues have increased a lot! Every night I struggle trying to sleep while my body is in such tremendous pain and I rarely get any sleep until early morning or exhaustion takes over, whichever one comes first.
Despite taking slow release pain medications at the same time every evening and applying heat packs and tens machines to most of my body, it is not often that I can find any relief. So I move, turn, reposition, massage and suffer.
Sometimes I have been lucky enough to fall asleep around 3 a.m. only to wake in agony and needing to use the bathroom. In a normal night I will wake to use the bathroom between 5 to 10 times and that is also incredibly exhausting!
These late nights / early morning mean that I often find myself waking at 11am or midday after only having had six hours of broken sleep. Always waking up exhausted and in terrible pain again.
Time for strong pain meds and coffee!
The impact of these struggles has meant that I am unable to function at all before midday and trying to get through a day can be so very hard and taxing.
Ant then night returns and I must repeat it all over again.
My appointments must now be scheduled in the afternoon, if at all, which means that many specialists are now out of my reach since many only do morning consults. It’s ironic that I am now too disabled and unwell to go to the doctor and no specialists will ever do house calls. I don’t know of many that will even skype although this technology is readily available.
This winter I found that I could only enjoy a few hours of light before everything goes dark again. Which makes for endless darkness and a feeling of disconnection with the outside world.
I have grown to truly dread nights!
I can’t really understand why everything has worsened so much and so quickly this year, although my mind constantly wrestles to find answers and solutions.
I trialled yet another immune suppressant drug this year however it has not delivered the results I so desperately wanted. Quite the opposite in fact. The side effects alone were incredibly difficult and so I have chosen to discontinue it rather than spend precious time and energy with more pain, nausea, dihorrea etc.
Sadly this year I haven’t been able to do very much socially and the fatigue has been debilitating. I have never experienced this level of fatigue in the past 10 years. It’s been like a waking coma.
I am very aware that I must do everything I can to try and maintain some semblance of a healthy diet (of sorts) and continue to make whatever movements I can. So I have been trying with all my might.
I stretch, I do as much range of motion as I absolutely can, I attempt to use my walker and do whatever moving I can. It saddens me that movements have become very little indeed. But I must not stop.
My feet joints have become so painful that I cannot weight bear unless I have taken a sturdy mixture of pain medications. I fear my next MRI and what it might reveal. My last rheumy spoke of surgery some time ago but I have feared going down that path. I try desperately not to think about it. Not now at least.
These diseases have combined to alter so much of my life and function that I barely recognize it all these days and it is hard not to be deeply upset by it as this could easily turn to depression; which would only increase my battles and burdens.
So as the year slowly disappears I have tried several steroid loading regimes and I hope that this is will make some improvements with time.
Hope is what so many chronic sufferers cling to each day and what we try to share with each other. I live for tales where fellow sufferers have experienced improvements and relief and I cling to the idea that I can still experience it myself.
Although I am aware that several of these autoimmune diseases are progressive and will progress, there is no part of me that wants it to progress now.
If I could somehow stabilize some of these symptoms and manage some of the harder ones better, than I could possibly make a peace with where I am at in my illnesses. Possibly. But while I am still in this state of flux and unpredictability it is like being in some kind of free fall. This is proving too much for me emotionally and I have had to turn to my husband and rely on him so much more this year.
I don’t like asking more of him but I have no choice at this point. I am so very grateful of how has taken it all in his stride and so very proud of him too.
As I said earlier, perhaps many of you will identify with this piece and also identify with all the emotions that are mixed in with these challenges, and I hope that through identifying and uniting it will allow us all to find hope together.
That’s what I hope and write for anyway.