This too shall pass
I have been repeating this quote over and over in my head since February when my health first started to decline. Its the one thing that has kept me going through a year which I can honestly say is the toughest one I have faced.
In February I took a tilt table test, this was to look at my body’s reaction when I ate or drank because I have postprandial hypotension. Before the test I had to consume 250 ml of lucozade which is just pure sugar and tastes like syrup. Once they had their base line measurements I was then tilted. According to my consultant it was the most impressive one yet. However for some reason the tilt table test triggered off my symptoms in a way no one could have expected or anticipated.
My previous tilt table test in 2011, the one that got me diagnosed with postural orthostatic tachycardia syndrome had left me bed bound for around 5 days. I had been expecting the same with the one in February. This time I was fine for a few days and the wallop! I ate my lunch and then felt my heart rate increase (which is totally normal for me) however after several hours my heart rate had not come down and I was feeling short of breath. Having been in this situation before and knowing that the local hospital would admit me but then do nothing I saw no point in panicking….just yet. I rang my gp the following day and went back on fludrocortisone.
My husband ended up taking a week off from work to look after me. To ease my symptoms I used my oxygen concentrator and ended up staying in bed for well over a week. Since then I have never got back to my pre tilt table level of health.
As those of you who read the blog regularly and follow me on facebook on my The Myasthenia Kid page will know this year I have battled cellulitis 4 times, I have been admitted to hospital because my bladder decided to stop working and I needed to be catheterised. My autonomic nervous system symptoms are still pretty awful. As I write this my head is swimming as due to the heat I am continually feeling faint and dizzy.
Putting all the dysautonomia symptoms aside (I have kind of got used to them horrific as they are) my major battle at the moment is my chronic back pain. Bad backs seem to be a family legacy. Obviously my mum is waiting for major spinal surgery (as written about in Democracy in Action part one and two), my father has also been diagnosed with back problems and needs to have steroid injections but is refusing them at the moment much to the rest of my familys (mum, sister and me) annoyance. My sister suffers with awful back pain and I have been slipping discs in my back from the age of 16.
The pain in my back and the referred pain is so bad that it is depriving me of sleep and making me feel sick. Its not massively high on the pain scale, I wouldn’t rate it much above a 5 -6/10. However it is constant there is no relief.
On a good day I have a burning sensation down my left leg and an altered sensation, my leg feels wet and my foot can feel like I am wearing a wet sock. I also suffer with iliac crest pain – it took me years to work out what this pain was. I can push through this and enjoy whatever I happen to be up to.
I have whats called leg dominant back pain, which means I have very little pain in my back, most of my pain is caused by the nerves that run from my back down my legs.
On a bad day (and unfortunately I am now having more of these than good days) the pain is down both legs, my knees throb. My buttocks and the backs of my legs ache and burn and I have a small amount of back pain. On a very bad day the back pain is awful and any sudden movement will trigger a wave of spasms. I have also noticed that my legs will feel heavy and I feel like it takes a real effort to move them. Keeping a diary of the pain I have also noticed there is a connection between the bad pain days and decreased function of my bladder and bowel.
Nothing has happened so far to make it a medical emergency such as double incontinence or not being able to go completely for hours. Other than that incident at the end of June when my bladder packed up completely and I ended up with acute urinary retention.
To be honest I have been living with this nerve pain in my leg since 1999 when the original back injury occurred and I never really gave it much consideration until the lyrica (pregablin) I have been prescribed stopped working and my mum found out what a terrible state her back is in.
My back symptoms ramped up at the end of March and I decided to do what I always do which is ignore them. However the pain has increased to such a point now where I can no longer do so. Due to it being nerve pain my opiate pain killers have zero effect on it. Doubling the lyrica dose at night worked for a month or so but I have now had to double that dose and double my morning dose.
My back has got so bad that I am unable to do the things that I want to do. Combining the dysautonomia and the back issue I am no longer able to complete the small tasks around the house that I have always done. Things are starting to build up and get on top of me.
On Friday I realised that I can’t do this anymore and had to ask for help. So I now have a cleaning lady who will be coming for 2 hours a week to help me keep things straight. I can’t keep on asking my husband to do more and more as its just not fair on him to be working full time looking after me and the dogs and then expecting him to do a massive clean as well. At least this way his days off will be spent spending time with me instead of impersonating Mrs Mop.
I find it hilarious that I am so house proud now, before I got sick I didn’t do housework unless someone was coming to visit. I was working full time and we were always going out somewhere cleaning seemed like a real drag. Let me be clear my house was never like something off hoarders but it was dusty and things weren’t always put away. Sheets and towels were always washed once a week its just what I call the finer detail was never attended to.
One of my fondest memories is my mum coming to visit me in my flat and her saying “you don’t iron your sheets then?” I replied “when I don’t work full time it will be top of my list”. I will be honest ironing my bedding has never made it onto my list of things to do even though I no longer work. To me ironing bedding is as pointless as ironing underwear, life is just too short (and obviously I am physically unable to be stood at an ironing board long enough to iron 2 sets of king size bedding!).
As I say my house could never have been described as something out of Hoarders (one of my favourite shows that I like to watch and feel smug. I do know these people have a mental illness before anyone decides to give me a piece of their mind!). It was dusty and well lived in. I had a friend once come over and write clean me on the dust on the TV screen. So I wasn’t exactly on top of the cleaning back then. Plus hubby wasn’t into it too much either having the old fashioned impression that housework was my job. Thank goodness that outdated attitude of his has now gone. I always find it amazing when I look back and see how much both of us have changed from before I got sick.
My attitude to cleaning changed when I was at home 24/7 I wasn’t prepared to sit in a mess all day everyday. Over the years I have become obsessively house proud which in turn has made hubby more so too. I am guessing some of the reason for my obsessive attitude towards keeping the house tidy was that I didn’t think it was fair on hubby to be working all day and coming back to a mess. It was all about what I could contribute to our relationship now I wasn’t working. Despite the fact that I would suffer enormously trying to keep on top of things I still felt that being at home all day meant I was responsible for everything in the home. It was never something that my husband demanded or expected it was an unrealistic expectation I placed upon myself. He didn’t care if things weren’t done as he would sort them out when he had the time.
I always felt things had to be perfect. I am guessing that controlling my environment was a way of having some control in my life. I cant control my illness or how I will be feeling hour by hour, so by controlling how our home looked soothed me psychologically. Now I can no longer do this it troubles me and makes me feel guilty as I am yet again contributing less to our relationship. My mantra “this too shall pass” is continually on my mind.
Hubby actually told the cleaning lady she won’t have much to do. I beg to differ, hubby still doesn’t see the finer detail and I am fed up with the battle of getting him to hoover the stair carpet and the bedrooms. At least this way I know that they will be getting done and without argument!
It was a very bittersweet moment when I realised that I could no longer manage the little household chores that I had completed to ensure we kept on top of things. I am sure if we didn’t have the three dogs there wouldn’t be as much mess but as I could never part from them admitting I needed help was the only solution. It does compound the sense of failure I feel. I am unable to work and now I am unable to keep the house tidy. It makes me ask myself what can I do other than just survive at the moment. I will admit I shed a few tears over this decision.
Its going to be very strange for me having our cleaner in the house doing the jobs I used to do (and more). I am already getting anxious about it, what if the dogs scare her – they can be quite noisy on first meeting people, what if she thinks our house is really dirty, should I clean before she arrives? Its all down to a fear of being judged. She has already text me to reassure me that its ok to ask for help. It doesn’t stop the anxiety though, if there is something to worry about I will find it.
So here I am the day before my cleaning lady starts trying to distract myself from the anxiety that I am feeling. I have to create a list of the jobs I want done tomorrow…..which I still haven’t started because I feel guilty that I need help.
I know that “This too shall pass” however I am beginning to wonder when this year from hell will end. I have never been one to wish the year away but this year is one that I wish would just go. I want a do over and get back to how things were.