No prizes for guessing the content of this blog, for once the title gives away the text. When I look back to my teenage years I think thank goodness there wasn’t social media in my time. Don’t get me wrong, I had a fantastic time, more fun than I ever imagined and I am fortunate that I still some 25 years on see many of the people who also share those memories. The twenties was when things changed, I had my car accident and lots of things I thought I knew I would do, loved doing and had planned were taken away. It was an instant removal for four years of recovery.
After this my stubbornness and willingness to not give in kicked in. Before I knew it, and against my consultants advice I was back working at a college. It was hard, it was painful but it was rewarding and I was there for 10 years. Unfortunately as I got worse my ability to work diminished and I had hours cut, and cut, and cut some more until it got to the point that I knew what was coming but was dreading hearing. I was going to be retired due to ill health. Those words were for a number of weeks almost as painful as my physical pain itself. If I couldn’t work what would my role in life be, what’s my purpose, how am I a good role model for my family, how will we cope financially, what will my wife think, what will my family and friends think – these are just a snapshot of some of the thoughts that were running constantly through my head and that still do this day do. I look to all the world on the outside a happy chappy who has accepted his disability and who gets on with life putting his best foot or wheel forward, however one thing you learn to do as a consequence of masking your pain is learning the ability to also mask your feelings. Despite having amazing people around me I felt worthless, useless even and yep some days and nights when I’m awake suffering from pain I slide back to those emotions.
Luckily I had a pain psychiatrist as part of my consulting team and I remember vividly the sessions we had together, the tears and emotions that came out and the sheer relief of offloading was a huge step forward for me in accepting that ill health retirement was the next step in my journey. So what did it really mean for me, I wasn’t becoming 68 overnight, I was 38, I was, I am too young to be retired. To start with I had the pain to contend with, to get back under some sort of control if I could. We had my medication regime to change, I was fed up of taking over 45 tablets daily and not knowing what was and what wasn’t helping. Not working meant we were able to do this, I was able to go through withdrawal off one and try another and so on. This has been done with each of meds and I have got rid of some #celebratethemsmallvictories . The first step forward in the last two years since stopping work has been that I now have medications settled in a regime that have for now stabilised my pain, not reduced it so that it’s gone but reduced it enough so that we can plan my week to a certain extent and know that with careful planning and pacing achieve most of it. The pain is high but my meds allow me function to a certain extent, to live life rather than just wallowing away. This has with it some issues as those who don’t see judge. I mean that people who see me out only see that, they don’t see the days preparing to go out, the days recovering afterwards nor all the help I receive to get me out in the first place. Nonetheless being able to go out, even just once a week to shop gives me such a buzz and sense of achievement. Albeit an entirely different buzz to my 16-24 years and what I was doing then and thought I’d be achieving now. The sessions with B were excellent in making me realise that goal setting is important but so to is goal revising. We don’t have crystal balls and we don’t know what we may or may not achieve.
I have after a very long process and at great personal expense to the family finished coordinating making our home wheelchair accessible. Not as easy as one may think even living in a bungalow but we’ve done it. We’ve paid for it, and it will be ours until the end. We’ve negotiated the minefield that is adult social services care. This was another huge step for me.
Having to admit that I needed support during the day was a gut wrenching decision, but in truth it was needed. I’d survived for years with help and support from my famiends (family and friends) but I needed something more regular, something that I could plan days out shopping, to help me in the hot tub for my Hydrotherapy, to dry and dress me afterwards, help with housework, cooking, and any number of obscure tasks that most take for granted. Here I was perhaps most fortunate of all when finding my personal assistant. A very good friend’s circumstances meant he was looking for a part-time job and with our children growing up with one another and being a close family friend it was a match made. Admittedly the first time I needed help drying and dressing was a bit weird and we both had to get over the whole friend / PA role but it works well. I have company, I have someone who laughs with me as well as at me and most importantly someone who cares about me as a friend first and the person he cares for second. This has meant that moments like toilet accidents and face plants can be laughed about and sorted without the awkward embarrassed feelings I was worried we’d have when getting help planned. It has also meant that family who had helped have been able to go back to being family first and occasional support second.
Personally I have been working hard to lose weight, the unfortunate side effects of many of my meds is the weight gain and increased appetite. The more I weigh the more pressure I put on my spine and joints and so the vicious circle begins. Trying to lose weight without being able to exercise is not easy, and loving exercise in my former life I have started slimming world, this has given me something to focus on personally since mid September and I have lost 2 & a half stone thus far.
Most of all though my biggest and most enjoyable task since not being able to work but putting all the adjustments into life is being a parent. Not being in agony all the time, not taking so much medication I couldn’t be alone with my children and not using up spoons on some mundane tasks means I have been able to be the best daddy I can ever be. Yes sometimes the activities doesn’t look the same as when others play, or it is short bursts of playing and I’m one of the few dad’s who regularly do the school run each day.
I have heard my parents and in laws say they have never been as busy as when they retired and in some respects this is true. My financial worth to my family in pounds and pence may have decreased by my real worth in being there, having friends over and contributing to our household have increased ten fold. Yes I still have days where I like to crawl in a corner and suffer silently, but I also have fun days and laugh and play and try to be the best dad I can be. If I wasn’t injured I’d be a regular stay at home dad, but having a disability means I am to some perceived differently. I have however in the last two years since retirement reflected on lots. I don’t regret any choices made, I don’t regret any decision made and I have learnt to accept that life is what it is. Those who judge you have no right to and we all have sacrifices that we make, we all face issues and life is never a bed of roses so you can only do your best, surround yourself with the right people and they will help you through the good and bad times and it can perhaps be summed up best as
Those that matter don’t mind, and those that mind don’t matter.
Well I’ve waffled on, used my spoons and now it is rest and relaxation until hometime and teatime…..