Everyone knows that feeling of being ill, you are in bed have to miss work and can’t do anything. Obviously this example is great for someone with the flu, but what about if like me you have chronic pain and a chronic disability/illness. Are you supposed to just hide away in your house and never do anything again? For a number of years I did this, then I went through that period of feeling guilty and forcing through the pain barrier to get to work so I couldn’t be accused of being a benefit scumbag as the press likes to call us in the UK. I spent 10 years accelerating my pain and worsening my condition before my body gave up on me and said you know what enough is enough. My latest MRI showed significant damage in my lumbar spine to add to that already in the thoracic spine and my pain resulting from nerve damage. I found myself regularly face planting and after many years I accepted my condition and the help that was available to me.
It was like being reborn I am going through a period of adaptation at the moment making my bungalow fully accessible for my wheelchair and although it is needed and is stressful I am mindful that it is also a family home and as such we do not want it looking like a hospital bed. Even more than that I am learning what I can do with my pain levels and spoons each day and what I can’t. I am very slowly learning that pushing myself when I am in pain is in the long run extremely counter productive. Being a very stubborn Taurean, this lesson has taken over a decade to learn, is an ongoing process and one that I will deny to the hilt if my wife reads this 🙂 .
The perception of being at home unable to work is that you have lots of time resting, getting yourself better — the reality for me is very different, I know I am not going to get better, there are steps of my pain management jigsaw that I can work on to reduce the amount of pain I am in and to maintain a balance in my spoon levels and baseline.So what are these, well my spoon count is the number of spoons I have each day to undertake tasks, so eating, dressing showering, shaving, going to the toilet getting out of my chair, my physio exercises and so on all cost me spoons. On a bad day these get used up really quickly and you get very little sense out of me once the spoons are gone.
The tricky part is I never know what sort of day it will be so how many spoons I will start with, and how many spoons each task will take. I have had to swallow my pride and accept help from my wife to shower, dry and dress me to conserve spoons and the same goes for helping around the house. It seems to some people idyllic sitting at home in front of the TV and watching repeat after repeat on the TV but even this uses spoons and I have to shuffle and adjust my chair to remain as comfortable as possible. Then I have my physiotherapy exercises that it is important to maintain as a way of stabilising my core and reducing some of the pain I have. Being a once very competitive sportsman it is hard to accept my new baseline. 10-15 steps with masses of pain as an achievement, I used to run 5-6 miles and on a good day this would be 8 miles so getting excited over a few steps has been a very tough journey. If I was still that person who was always exercising I would happily be at home everyday, but I’m not. So the days and weeks are not good, and next time you think about saying how lucky I am being at home stop yourself and think about what living in constant pain means
My days are filled with hospital appointments, doctors appointments, physio, psychiatry, my Support Group Norfolk Against Chronic Pain, and now a few hours a week volunteering with the Wymondham Access Group that I have founded. Chuck into that the trials of different drugs, the different scans the results and the constant reliance on others makes me feel a real pain in the backside. There are however moments in my day when I get to have a little bit of a chuckle and make the pain a bit more bearable. One of these is when I use my crutches to transfer from my Wheelchair to my car (by the way Simon a great tip on how to use them to get out of my chair reducing the pain, the first physio to tell me how to do this) and get behind the steering wheel. I have an adapted automatic motability car meaning on a good day I get to use my Kuga if someone else is there with me. The looks from some are disbelief, others admiration and many have actually knocked on my door and asked to look around the car as they have a large boot space with careful packing you can get in a wheelchair and mobility scooter so it gives you options when traveling to new places.
I try to make the most of every day, but some days (like today) I spend the whole day conserving energy as I know I have the Town Council Meeting this evening it is important for me as a member of the parish, with topics close to my heart and as chair of Wymondham Access Group that I attend. The meetings are not comfortable the room is far from welcoming and the unknown time limit can wipe me out for days. I have only just recovered from two weekends ago and it is back into the lion’s den tonight.
I am trying to educate people to be more understanding of disabled people, to not push them out of the way in the supermarket (it happened again last weekend to me) and to be more tolerant of others. Doing this when you are not very tolerant of your own adversity is a difficult thing to do. I am so frustrated at what I can’t do and how I stop others having fun I don’t always listen to my own advice. I have however learnt on this journey that I am not alone, there are others out there and between us we are helping others to see the person behind the disability. It is all I can ask for as my legacy and that is that people are not defined by their disabilities and what they cannot do but by what they are doing, what they are achieving and that we are just like everyone else, only some of us we use different modes of transport to get around. It doesn’t mean we cannot walk, just that walking is extremely painful or difficult. This is very hard for society to understand, we like things to be black and white and these grey areas do not fit into books, it is why I find the looks of a wheelchair user getting behind the wheel of the car as funny.
I read a blog recently and I wish I could remember which one but in it they said that it seems society really struggles to understand part-time wheelchair use, unless it is for the elderly. That it takes the view that you if can walk a few steps you should, but take it from me when it causes a huge amount of pain and takes days to recover, doesn’t it make sense to accept a little help?
Over the past few years I have embraced the help that is available to me, so I now have a wheelchair, mobility scooter, crutches, profiling bed, toilet frame, wheelchair accessible bathroom, easy turn tap and shower, shower seat, widened interior doors, profiling bed, rise and recline chair, adapted car, slow cooker, grab rails, perching stool and a hot tub, and I tell you what with the exception of the cost it has had on our family finances I love every single aid. I cannot wait for my kitchen to be finished, the ramp and rear doors installed and then project access will be complete. I resented the need for aids for years (did I mention earlier I am stubborn) and refused point blank to have them, now just a night away without them and I miss them incredibly. I notice the impact of them on my spoon use and how quickly I crash each day, and how long it takes me to recover.
So my advice for anyone struggling with mobility, or frankly any other health issue is to seek out and accept the help. Embrace it, as it will make your life easier. Before you know it, it won’t feel like a big deal anymore, people who matter look beyond the aids and don’t mind them littering up your home, they even enjoy the use of them and it will soon become part of your normal life, or perhaps the start of your new life.