Health suffers through caring
Hi again all and I hope this post finds you well!
I was sitting here thinking about some of the things that I could blog about as I am awake again in the wee, small hours of the morning. I thought about talking about the fact it is carers week, or because of their caring role or even how fathers of children with special needs children often feel isolated.
I my own personal experience I have had experience of both my own health suffering as a result of my caring role and also as a father feeling a lack of adequate support as well. I want to talk in this post about my health first and later in the week I will go into what it is like for me as a father trying to cope with a caring role.
I have suffered for many years now with Chronic Back Pain for which they haven’t been able to find a cause. I have been for an MRI scan and I have had various alternative treatments such as acupuncture and using a TENS machine but nothing has worked so far. At the moment I am currently taking Morphine Sulphate Tablets, Oramorph (Morphine Solution), Diazepam, Acupan, Paracetamol and Feldene Gel for muscle spasms. On top of this I also have to take Omeprazole to protect my stomach and Metformin to cope with type II diabetes. So as you can see that is a fairly potent mix and I need to take this every day otherwise I am in such a great deal of pain that I can barely move from my bed (if I even get in it due to my insomnia as well).
The problems with my back have been around as far as I can remember as I used to get severe pains and muscle spasms when I was out playing with friends at about 7 or 8 years of age. They were so bad that I used to ask my younger sister to punch me in the bottom of the back to try and ease the muscles off (I know, every sister’s dream to punch her older brother). This used to work for a while but it did get worse and I used to ask her to walk across the bottom of my back to try and ease it off. These were always put down to ‘growing pains’ and I thought nothing more of it but I just learned to cope.
My back problems surfaced again really badly when Manga was born in 2000 which resulted in me being bedridden for a long period of time and even when I was able to get out of the house it was to go to the doctors where I was told I had back problems ‘because I was fat and ate too much junk food’. Now they had not asked me any questions about diet or anything like that at this point so my self-esteem bottomed resulting in me taking antidepressant tablets for a long time. What was unknown at this point was that I was suffering from Binge Eating Disorder (I will talk about this in a future post).
My weight ballooned up at this point to around 19 ½ stones (273 lbs) and at 5’7” (170 cm) this was way too much over what I should be. I suffered on and off with back problems for the next 3 years and my weight fluctuated up and down the whole time.
In 2003, my SWAN (Syndromes Without A Name) daughter was born and that is when my health started to take a real nose dive. My daughter has hypermobility and global developmental delay amongst other things but this meant that we had to carry her everywhere and that included up and down the stairs to bed and around the house all day, every day. This totally devastated my back and very nearly caused my wife to suffer a similar fate as we were constantly carrying and moving her everywhere we went. As she got older, she got heavier and her behaviours got a little more violent and not only were our bodies were battered and bruised, but our mental health suffered as well. We were lucky to get an hour sleep between us on most nights and, because our daughter is non-communicative, she would scream or moan from the moment she woke up until the moment she went to sleep (she often still does to this day). We both ended up on antidepressants, gained a lot of weight (my heaviest was 22 ½ stones (315 lbs)) and were generally run down, stressed and felt like there was no way out of the desperate situation that we were in.
It is worth mentioning at this point that during all of this physical and mental exertion looking after our daughters there was also the fight for DLA as we had to go to tribunal to get the correct amount, the fight for the correct equipment to make sure we could transport our daughter to appointments etc., the fight to have the correct therapies, the fight with specialists about telling us she had numerous different syndromes and then telling us a few weeks later they weren’t correct and finally the fight to try and get some kind of break away from our daughter so we could rest. I can safely say with my hand on my heart we had truly hit rock bottom.
Fortunately we feel like we hit a lottery win when we finally moved out of our old house into a 3 bedroom bungalow which was perfect for both myself and my daughter and had all of the adaptations that we needed already done. My daughter progressed fairly quickly and started to get mobile and can now walk from our living room to her bedroom on her own. This was a major step for all of us as she gained some independence and started to come out of her shell a bit more. Her awareness levels raised and she became a little more interactive with the world around her. We also found we were entitled to some respite with a local short break care unit. They are fantastic with all of the children and it really did start to give us some of our personality back and allowed us time once a month to get some rest and recuperate from the many sleepless nights that we still have.
So at present we still feel like we are automatons most of the time, we still struggle to get through day to day living while grabbing any time we can together, I still struggle to function daily and need my medication just to get out of bed and we could still do with a lot more quality sleep. I have started to lose weight dropping just shy of 3 stones (42 lbs) since January 2012 and I still struggle with my insomnia but things could be a lot worse. Things could be an awful lot better as well but I don’t see it happening any time soon!
Until Next Time Stay Safe