My life is all about small victories…. the victory of getting up in the morning, of having a conversation, of writing a blog post. It’s these small victories that keep me going day after day, well that and my husband.
Life can feel like a total battle sometimes, whether I’m battling my body, my mind or the health service, it feels relentless at times. However I have some victories to report to you today, victories which have made me realise that there ARE people out there who care and want to help.
First of all, a few months ago I got my wheelchair. It’s the most basic, plain wheelchair but I love it! It means I can get out of the house! Obviously not on my own, but it has given me some hint of freedom on my better days.
Then on Saturday a little piece of laminated card popped through the letterbox. This little piece of card is as though someone is saying “yeup, you need this, I agree you’re ill”, it’s like a key to a new world, the world of oudoors! That little bit of card is a Blue Badge.
It’s hard to put into words how much this piece of card means to us. It will make a massive difference when going to hospital appointments not least because J wont have to push me for miles or struggle to get me from the car to the wheelchair because there’s no space between cars.
I have to tell you about our ridiculous trip to the hospital the other day….before the blue badge. J parked up the car a considerable distance from the entrance we required, that was to be expected and we figured it wouldn’t be too much of an issue as J could just push me in the wheelchair on this occasion. Wow did we underestimate that short journey! All was going well until we came to the first of many roads we had to cross. I think you can guess where I am going here…the kerb was HUGE! In fact there were no lowered kerbs anywhere to be seen! J had to struggle with the wheelchair to get me from pavement to pavement and eventually we just walked along the road!!
Now surely outside a hospital of all places there should be a decent level of accessibility? J is 27, he’s fit and well, but tackling these kerbs proved very difficult. Imagine an elderly couple trying to get to an appointment or even my own parents, I know they’d struggle (note parents I’m not calling you elderly!).
Completely disgusted by this I have resolved to take it up with the council, when my brain will cooperate long enough for me to write some kind of coherent letter!
Apologies for that wee tangent!
So, back to my victories! Well I arrived at the hospital the other day to see my clinical psychologist. She took one look at my wheelchair and burst out laughing. At first I was kind of taken aback… why is she laughing? This is brilliant! This is my relative freedom we are talking about here. Anyway it turns out she thought it was the most “unfit for purpose” wheelchair she had ever seen! Why? Well I need someone to push it at all times, I can’t even move myself a few inches without help.
I’ve mentioned before how much I hate asking for help, and well the psychologist quite rightly pointed out that this was the worst possible solution for me from a psychological stand point. The great news is that she did something about it and I’ve now to get a wheelchair upgrade!
What’s my point? Well my point it this. I was so amazed by the victory of actually getting a wheelchair that I would have taken it no matter what it was like. For us, it was a life changing event and we were just so pleased to be given this help! However, for someone else looking in they couldn’t believe that we classified this as a victory. In fact she was so appalled by it she asked my permission to contact the relevant authorities to sort it out.
Then another amazing thing happened…….. she wanted to help us MORE! She has put the wheels in motion (sorry) to get an Occupational Therapist (OT) out to our house to see what kind of help we can get at home. I thought I was going to cry…. someone was helping us, someone cared. Someone was taking the time out of their day to make phone calls and fight our battles for us. Someone was leading us to victory!
I can’t quite describe how amazing that feels. For 3 years J and I have struggled on by ourselves and to be perfectly honest until now no-one has shown an ounce of concern about how we get on at home or how J copes! At my assessment for my blue badge I was with TWO OTs, I told them that J has to carry me around the house and their only reaction was “ooh he must be strong”. That was it!
Yet here we are now with the support of a wonderful lady who cares. She doesn’t just care about me, she cares about J too, a man she has never met! Do you know what even if nothing comes from her phone calls and the OT visit I will still be immensely grateful for the kindness and help she has shown us. She was shocked that no-one had tried to help us with this before and in a way that kind of just sums up our whole experience with the health profession since I got ill…they’ve done the bare minimum to help up til now.
I feel like for once people are starting to realise that it’s not just me, but J that needs help too. I feel like we have won a huge battle without even really realising we were fighting it. I feel like this could be the beginning of some help, but importantly to me it’s help I didn’t HAVE to ask for.
Victories can be hard to come by in this world, but every time I sit my bum in my wheelchair or pop my badge in my handbag it’s a reminder that there are people there who care, who want to help and who, finally, have some understanding of M.E.