…….this is a question I have been asked by the online community and also in person, there have also been people say to me that they did not realise just how bad and how much pain I was in and it is partly for that reason that I blog, the other main reason is that I needed an outlet for my own sanity. I am not one who can sit and write a diary as I am not able to get into a comfortable position to write for any length of time and holding a pen when you regularly drop things and lose feeling in your fingers is like asking my LG to write a literally novel when he cannot write her name. Doing it this way and online means that I am encouraged by reading others who I now follow in the blogging community to keep up with mine, even on the days that I just want to hide from the world.
For me becoming disabled happened overnight, followed by 12 years of burying my head in the sand, being stubborn and also not listening to people. This has both been good for me and bad for me, like so many things in life are! So one gloomy night in November I was returning home when I was involved in a serious car accident. Initially my injuries did not seem to be too bad some whiplash and soreness but overtime and as various ailments lessened I became acutely aware of pain in my thoracic (at the time I only knew it as that bit between my shoulder blades) and lumbar spine (that bit at the bottom of my back). As the pain continued I had scans and they revealed damage to my spine and I begun on my journey that is now in its 14th year.
After my car accident I was forced to leave my job as I was unable to work, had little prognosis of my return date and as I had been with my company for less than a year had very little protection. I was signed off from being able to work indefinitely and had the next nearly four years off work. I remember a couple of years of self pity, loathing and hate and considering all options in my life. I pushed some people away from me, spiraled into debt and used alcohol as an additional pain killer masking the pain. I started dating my now wife seriously a couple of years after my car accident (we had known each other at high school and had done all the same subjects at A-Level, I had even used some of her notes that were photocopied in my mum’s loft to catch up when I had time off with glandular fever). I remember going to the Job Centre and asking for help getting back into work only to be told from them that I was signed off indefinitely so didn’t need to worry. I explained that I needed for my own sanity and mental health that I needed to get back into work, I was given the opportunity to do some volunteer work placement to try out a few hours and to see what I could do.
I started applying for jobs and became really good at masking the pain I was in, took vast amounts of prescribed medication and was fortunate enough to become employed by a local college in their administration department. My post initially was full time and there was a certain amount of flexibility over start and end times. After a couple of years it became apparent to those closest to me that I was struggling, the pain medication was having to be changed as my body was adapting and I was missing work more and more. Each time I had a flare up the pain would increase dramatically and when it was back under control my new level of functionality had worsened. I was counteracting and compensating for the pain by sitting, laying and even walking differently and this was in turn causing more distress on my body. Despite my best efforts to pretend otherwise my body was telling me I could not work full time I was working for months and then laid up for months in this boom and bust cycle. We gradually over time reduced my hours of work to eventually me working part time only 18 hours a week term time only 36 weeks of the year. For a little over a year and a half things had stabilised and despite the odd days here and there with a combination of pain meds, exercise (stretches from the physio) and stubbornness I continued working.
During this time I was being advised to use my mobility aids and accept help something of course which I did…….. NOT! My wheelchair sat in my garage for months before I would use it and being out in actual public in it terrified me. I was having more and more spasms, intense pain and simple things like going to the toilet and showering became incredibly painful. Of course I did the sensible thing and spoke to my wife and family about it and asked for help…………NOT! Why, well I was scared of the responses I would get, I was scared of the labels and stigma’s attached with being disabled and I was worried that people would not understand. Heck I couldn’t even understand why my back was getting worse as quickly as it was (well at the time I couldn’t but looking back now I can understand it a bit more). For the most part my employers were very good to me, initially access to work paid for a number of aids including a specialist chair and after Occupational Health assessments at college more chairs were purchased for me along with a desk with adjustable height a funky ergonomic mouse and various other bits and pieces. I was at this stage using the NVQ’s I had studied for and experience I had in Business to mentor the fulltime business students. I loved the job and was proud of the students, I was even recognised in the annual staff awards winning an award for my work as a member of support staff.
The trouble with all this was that my pain, level of functioning and ability to help control the pain was all the time worsening. I was embarrassed to admit this and scared of what the consequences would be. Suddenly my life was spiraling out of my own control again and the simplest task like standing to brush my teeth was making me break out in a sweat. I didn’t want to lose working but I couldn’t carry on, and one day for want of a better phrase my body rejected me and crashed. I couldn’t walk to get to work, I’d fall and trip regularly and everything became a battle against myself.
Now this whole time I had been supported by my hospital in the Chronic Pain Management Centre but I hadn’t truly opened up my eyes to see what was infront of me and wasn’t willing to accept that I needed help. Things came to a head and I was unable to work November 2014 onwards. I was offered a place on a 10 week pain management programme and I have blogged about this previously and how wrong I was with my assumptions of the profile of the people on the course. I contacted my local GP and an action plan of all round support and care was put into place. Suddenly our bungalow started to once again resemble an old peoples home with toilet frames, shower seats and many other adjustments. I was reliant on my wife getting me washed, dried and dressed and life was spiraling out of control. I know that in life when things don’t seem to go our way I tend to hurt myself and others around me by doing things that do not take into consideration my own limitations. I was giving my family and friends a guilt free get out clause as to not hanging around with me anymore because of how difficult doing anything was. None of them took this pass and slowly I came to realise that my true friends and family were going nowhere and in fact were quite insulted at their pass. I got gloomy and found anger and bitterness in everything and especially with others who were trying to help but didn’t know how they could and angry with others for continuing to live their lives whilst I couldn’t live mine and things were coming to a head.
The programme and continued support I am receiving has allowed me to come to terms with my pain and disability 75% of the time and has given me the tools needed for coping with whatever life throws at me the other 25% of the time. Yoga and breathing techniques, mindfulness sessions and this blog have all become a way of me expressing myself and coping with the pain. It is not in my nature to give in and do nothing and I was terrified that accepting my disability meant just that, whereas actually it meant the complete opposite. I am learning to be happy in life and with my life and the adaptations I need to continue living. I am unable to work anymore but that doesn’t mean I can not continue to use my skills to help my local community. Furthermore I have so much to offer my family too and I know this is a two way street now.
So why do I blog about my pain and my journey, I guess it is to help the wi der community and to help others see my journey and know they are not alone. I belong to a local support group and help them and with the blog if I can help just one person I am happy. For now that one person I am helping is me, I am coming to terms with the changes in my lifestyle, I am not giving in, I am able to help my family and I am able to accept the help others give me. My pain will continue to worsen just hopefully now at a slower more controlled rate. I have realised that accepting is not quitting but it allows me to do things that are more enjoyable and blogging is part of the process I am in. If I go days without blogging so be it, if I blog or share a few articles one day great if I am too tired another day c’est la vie. I am starting to really flag so for now this is goodnight or good morning depending where you are. I hope I have helped you understand a little more about why I blog, the way my life has changed and the pain I am in, I do not want your pity, I just ask you not to judge me or anyone else BUT TO OFFER SUPPORT AND COMPASSION.