I wrote this a couple of weeks ago and never got round to publishing it. I wasn’t quite ready to hit the blogging world with a blog entry at the time, however I thought it important to write a blog post for potential publishing at a later date. I am glad to say that today is the day that I feel like publishing this particular blog. Please bear in mind that this was written a couple of weeks ago and I have moved on a little since writing this, an update will be at the end.
I have been struggling a lot over the last few weeks and have not been on WordPress for a while. I have been in one pain flare after another. “What’s new?” you may ask, after all I have been in pain for the last 7 years. I have been asking myself that question; along with “Why?” and “What have I done to bring this on?”
I don’t know the answer to the last two questions. however I do have some ideas that I will be discussing with professionals involved in my care.
I wonder to myself about why I have found it exceptionally difficult to deal with this pain flare which is now into its second, nearly third, month. For a short while I did deal with it, or did I really. I pushed aside how it was affecting me. Doing what I always do and that is push through. I still went to work. I still went grocery shopping with my son’s help. I still tried to keep going at home. Then my body decided enough was enough and threw far more at me than just pain and other low scale manageable symptoms. It was my body’s way of saying stop!
The symptoms were minor at first, starting very low-key as if they were whispering “you must stop!” Did I listen? No, I pushed on as I usually do. I was not going to let my body beat me, I was determined to win this battle and laugh in the face of CRPS and all its associated CR(a)PS symptoms.
Did it work? No it didn’t! The more I pushed, the louder my body screamed, until I could no longer manage life with all of the symptoms and pain I was suffering. I had no choice but to start switching off bit by bit. I started reducing what I did in a day until my life became get up, work, eat, go to bed – repeat. Literally just that, no cooking, cleaning, grocery shopping or even socialising with my hubby and son. Then on a Wednesday and at the weekend I would be so exhausted and in pain that I could do nothing but stay in bed or sit on the sofa. I had no quality time with my family, could not do things after work like blog or go out (not that I go out much anyway), I didn’t even have the energy to walk from the back door to the picnic table (all of 4 steps) to have dinner outside on a nice day. My poor husband was suffering with having to do absolutely everything and not getting any quality time with me – he is my hero, for want of a better word. Plus my son was being affected too. It is no joke when your mum is in bed at 7:30 pm, way before you! Then one day I was wiped off my feet entirely. I was completely flummoxed because I could not even manage work, and anyone who knows me will know just how much I love my job and to be off sick was very distressing for me.
Pain was immense, riding the rollercoaster of 8, 9, and 10s, instead of my usual 5 and 6s on the pain scale. The pain was not just in my foot, it was in my shoulders, neck, back, abdomen, arms – oh stuff it I might as well say all over because it was, except for maybe my little toe on my right foot; even my hair and nails hurt! It was muscular and joint pain along with pain on touch otherwise known as Allodynia – so clothing hurt to wear and as for bras they were out of the question, jeez they were incredibly painful to wear. I had to go with soft clothes, no labels and nothing that could feel like it rubbed on my skin. This is incredibly hard to do when even the lightest of touch hurts, a wrinkle in a bed sheet can feel like a knife cutting through skin and bone! My wardrobe of late has consisted of my soft feel pyjamas and cuddly warm top – can’t go wrong with them when in pain. However these were no good for going to appointments in! That is where my “floppy trousers” (thicker version of my pyjamas except they are outdoor wear) or my “duvet trousers” (my fleece lined Karrimors) came in handy. Both paired nicely with soft texture t-shirts and sumptuously soft Gelert fleece tops. See, my tall ship trip of a lifetime came in handy as most of the above were bought for that trip to reduce the irritation clothes can have on my skin, and in case I went into a flare!
Fatigue was unmanageable, so much so my eyes were wanting to close wherever and whenever. When I was working. When I was watching TV. When I was reading my book. At 8 in the morning, at 10 am, or even at 4 pm. Embarrassingly, I even felt myself nodding off when I was out and hubby was pushing me in the wheelchair, and I had to have a cat nap one morning when I got to work before starting at 9 am – head on desk for 10 minutes of shut eye! I knew I had to do something drastic to relieve these symptoms when my eyes were getting heavier for longer. I knew I needed to listen to my body and stop! My body had been showing me amber signs for weeks – extreme fatigue was my first proper STOP sign that my body screamed at me and I needed to listen.
On top of the pain and fatigue my cognitive function started to suffer. My lack of hand/eye co-ordination got scary when my crutches did not go where I wanted them to, I would think I had lifted them to walk only to find one was still firmly on the floor and this would make me stumble and appear drunk, I feared I would fall. My recollection of words got worse and finding the right word to use was really hard and becoming more frequent. This was simple everyday words I was struggling with, nothing too technical! My mixing up of letters and numbers were becoming a serious pain in the butt, especially when I pride myself on accuracy and getting things right – it was slowing me down and making me question myself, which started the stress/pain cycle. Even when speaking I was mixing up letters, for example I asked my son to “nass the pife” instead of “pass the knife” – all very funny and we laughed it off, however these were subtle signs that my body had had enough. I began to have slurred speech and felt awfully confused with what I was saying or typing when the fatigue washed over me. It came in waves, which were really bizarre, one minute I would feel reasonably alright then the next I wouldn’t. I had very little concentration and often found myself in really big mind black holes momentarily where I did not know what I was supposed to do next. I had no focus, I could not write blogs, I could not focus on reading, I could not even focus on boring TV. As for decision-making skills – they were well gone. Good job I didn’t need to make any big decisions over the last couple of months as I could not even decide what I wanted for my dinner each day, or what type of tea I wanted for my cuppa – Earl Grey, Lady Grey, Bakewell Tart, normal tea, Jasmine tea – I could not decide! That is how bad I was. It was very scary and would have been more so had I not had some idea as to why all this was happening. I knew deep inside that the signs were telling me that my body needed to rest, needed time to process the pain and bring down the pain levels. Did I stop, no! I pushed through until my body threw more at me, increasing the frequency and the length of time I felt “odd”, and worsened my symptoms until I could not function effectively anymore.
Then I had to stop! There was only one way I was going to alleviate these symptoms and that was to stop and let my body re-balance.
Then to top it all – the icing on the cake so to speak – my stomach was acting up, I had an irritable bladder, my TMJD flared, my headaches got worse and just to top it all my body decided to throw another couple of symptoms at me – swollen glands and the sound of someone using a hammer against my ear drum – a strange feeling rather than a sound – almost like something fluttering in my ear, I even had hubby and son looking in my ear at different times to make sure I didn’t have any trapped bugs in there! It is not there all the time it comes and goes – some days it will happen three or four times, then on others I won’t get the feeling at all. One to discuss further with the doctor if it does not clear soon, although at the moment she thinks it could be down to my swollen glands pressing on the nerves near my ear causing them to twitch.
I lost my smile! I could not put on that brave face anymore. The tears came all too easily. I knew I was in trouble when I felt that my smile looked more like a grimace. I could not smile through the pain. I could not put on the mask that hides all that pain away from friends, family and colleagues. People could see something was wrong and when they asked if I was alright I just burst into tears. Don’t ask me why I burst into tears I just did. I think deep down inside I knew I was no longer coping with all that CRPS throws at me and this was yet another sign that I had to stop!
So where have I been these last couple of months – sat on the sofa at home going with the flow of allowing my body to sleep when it wanted to. Resting, doing nothing except watch the birds, watching Game of Thrones (all five series are now watched from start to finish!), getting back into cross stitching (good for assessing the concentration levels – I could manage 10 minutes in the beginning and this increased over time), reading a book one slow chapter at a time because I kept forgetting what I had read (I am reading the Game of Thrones books – sad I know), or playing mind games on my mobile phone (to keep the brain ticking over). If I have not been at home then the highlight of my time out of the home has been based on attending medical appointments – pain consultant, GP several times, two rheumatologists (because I am complex case!), orthopaedic surgeon, x-rays, and the nurse for copious amounts of blood to be taken for various tests and retests. I even beat a nurse’s record for the number of phials of blood she has taken from a patient – a grand total of 16 of those little glass tubes they extract your blood into in one sitting!
I still don’t have all the answers as to why my symptoms have flared and changed, hopefully I will get those over the next couple of months when I return to the rheumatologist, there are still some tests to be done so I am waiting on appointments for those. However I can say that my symptoms have eased a little. I am kind of teetering on the edge of being back to manageable levels or falling back off the precipice into the raging inferno of CRPS and what other medical issues my body has. The latter I definitely do not want! So I am going to continue listening to my body and I am determined to pace myself a lot better than I have been doing. Hopefully by doing this I stay on track and don’t fall over the edge again. It has been a difficult few weeks, especially as I have a high work ethic. That is all I have talked about is wanting to be back at work. I have driven my hubby insane about it, poor man is fed up with me saying about wanting to be back at work. At the beginning I felt ashamed and weak that I had to take time off to recuperate. I was disappointed in myself, fearful of the future and in a terrible abyss of depression. Over the time I have been off I have realised I have nothing to be ashamed of, although it still creeps in there. Also I have revisited my meditation training and have been practicing mindfulness again; I fully intend to make sure these stay a part of my routine when I do return to work.
I will get back to continuing my blog about my travels on the tall ship Lord Nelson, in fact I have a draft of my next post waiting in the wings. I am just having to go with the flow of what my body is telling me. If I feel like doing something I will, if I don’t then I will not push myself, not at the moment anyway as I am still recuperating. Hopefully though I am beyond the worst of it now. Onwards and upwards from here on!
Since I wrote the above a couple of weeks ago I have improved and was finally able to return to work last week on reduced hours. My first week back has been exhausting, I won’t deny it, however I feel a lot better in myself for being back – I can see a future again. Plus I am smiling again, not grimacing, properly smiling. I just have to keep making sure that I stay that way and I am not pushing myself too hard. I would class myself as a high achiever and I can be incredibly hard on myself, which does not help when living with a chronic pain condition because I will always try to push through. I am hoping that by making a note of all that has happened recently that I will have something to refer back to that will make me see sense when I do find I am pushing myself too much. My next installment of my tall ships adventure is still waiting in the wings, plus I have a draft post about my recent spa break. For the moment though I am grateful that I have found the energy to put the finishing touches to this blog post that I started a couple of weeks ago.
Thank you for reading