What is the best age to lose the use of your legs? You may think that’s a strange question to ask, it’s never a good age surely? It is something that I have been thinking about a lot lately though.
I lost the use of my legs suddenly, I’d say overnight but it was more like throughout a day. One day I could walk, the next day I couldn’t. I have a rare condition called Transverse Myelitis and it’s a condition that has no preference of age, creed or gender. It doesn’t always take away your legs, it depends where your spine is affected, it can also take your arms, or your ability to eat or drink. It can take away everything from the chest down, or just your feet or your hands.
On my support groups we have all ages from babies to the elderly. When someone comes along and says their young child has it the reaction from a lot of people is the same.
“It’s so awful that it’s happened to someone so young, at least I manage to live most of my life before I became disabled.”
It’s as if the older ones have just accepted that they are getting on and expect debilitating illnesses to happen, but it’s so awful for a young child to get to it. Maybe they are right, it is awful, but it’s an awful thing to happen to anyone.
I’m 50, so no spring chicken, but I have a lot of life left in me yet. I have three children under ten to care for, I’m not ready to be an old lady. I miss being able to walk and run with my children. I miss being able to jump on the bus by myself and go wherever I want. I miss being able to drive my car and the freedom it provided. I’ve had all these things for many years and I was used to them. I didn’t want it all to be taken away, I took it for granted that I could walk, I think everyone does. I’m not full of self-pity, I’m getting on with things and hoping and praying that I can recover. It’s tough thinking about how I used to be though, and it’s really hard getting used to being like this. Really hard.
So how hard would it be for a toddler? One day they could be learning to walk and then next they are back to being baby like. What if they had to spend the rest of their life like that and never recover? It can happen. Yes it would be hard, but what would they miss. They would never know the joys of running around the playground with their friends, but they wouldn’t miss it because they would have never known it. They would face a tough life, but it would be a life that they are used to living from the start so would they cope better?
What about a teenager? Maybe late school years, just doing their exams, looking forward to leaving school and starting life as a grown up. How would they feel if they were suddenly wheelchair bound? They would miss out on a normal future, the one they were expecting. They would miss their past life of being mobile. The changes would be enormous. They would be expecting life to change after school, it’s sometimes a difficult transition, but is it going to be more difficult now they are immobile. Or would they cope, would they become strong and deal with their new disability? Would they even embrace it and make their lives better?
Now, how about someone a bit older, with a job, maybe a young family? How would they feel? Suddenly the life they are used to, their routine, their incomes, their responsibilities, everything they do would change. They will have others trying to deal with the changes too. They would grieve for their past and feel low about their future. Would their family be the ones that pulled them through? Would it be their responsibilities that gave them the strength to carry on?
What do you think? How would you feel at your stage of life if you suddenly became disabled?
It’s never a good thing to happen to anyone at ANY age, but we are human and we fight all we can and deal with what hands we have been given. it’s amazing what strength you can find within yourself to carry on.
I’ve reached the final of the MAD blog awards and voting closes in just a few days. If you’ve not voted yet I’d really appreciate your support for Raisie Bay in the School days category. Thanks x
I don’t normally share stuff like this because I think it’s personal. But people ought to know just how difficult life is for disabled people.
I have not been able to walk for five months now and I don’t know if I will ever walk again. So many things in my life have changed and mostly my personal independence. It made sense to make an application for a Personal Independence Payment, or PIP as it is known.
I filled in the massive form, putting as much detail as possible about my condition and backing it up with notes from the hospital and a list of the prescribed drugs I have to take every day. That was daunting enough, it took me days to complete it.
Then I waited for four weeks and I was asked to attend a medical assessment.
I’ve heard people complain about these assessments so I was very nervous, but I went along and figured, hey, one look at me and they will see how disabled I am.
I went in my wheelchair with my Other Half pushing me. When we arrived I was asked if it would be more comfortable for me to stay in my chair or transfer to the chair in the room. I opted to stay in my chair, why go through the physical pain to move chairs if it wasn’t really required.
Probably a mistake, if she had seen me move then she would have seen how difficult it is for me.
She asked me a few questions which were on the form and I answered them.
Then came the physical examination, she asked if I could do the standing exercises and demonstrated them..
bend and touch toes…can’t do
bend knees into a squat…can’t do
hop on one leg…cant’ do
She didn’t make me try, but I can’t do any of them anyway.
Probably a mistake, I should have tried then she would have seen that I can’t do them.
Then she gave me some upper body exercises to do while sitting.
lift arms above head…can do, but left arm is slow to move
put arms behind back….can’t do
turn head left and right…can do ( I can’t move my shoulders fully but she didn’t ask me to do that)
That was it. Over. We were in there about 20 minutes.
She didn’t ask me to walk, did not see me out of my chair, did not even ask me if I could walk or how far I could walk.
Then I had my results. I am offered a low rate payment for care and a low rate payment for mobility.
This is because I don’t need a lot of help around the home (just everything doing for me) and I can walk more than 20 metres (on the form it said without pain, but every step to me is incredibly painful)
I was stunned!
It’s not about the money. I was hoping that I’d get full rate on mobility. I cannot walk more than 10 metres with aids and it’s as painful as walking on glass. But without asking me or seeing me walk they can decided that I CAN walk more than 20 metres. I do not walk outside because apart from the pain I have balance issues, in the house there is always a wall nearby to catch me. (yes, this is even with a frame.)
I wanted the full rate mobility for one main reason. It means I can get adaptations for a car so that I may be able to drive again. These adaptations are well out of my price range and the cost of fitting them even more. If you get high rate mobility you can exchange it for these adaptations. I dream of being able to drive again, to be able to get out of my house easily, take my kids to school again, do the shopping, go to work. Yes, I’d have to take my wheelchair, but the freedom a car would give me is invaluable. Unfortunately, my legs don’t work so I can’t drive at the moment.
I could use the money I have been offered to pay for driving lessons for my Other Half (yes, unfortunately I’m the only driver in the household) and then he could drive me around…but it doesn’t give me the independence I crave…my personal independence!
The whole disability benefit system is a farce, it really is. I AM disabled, I CANNOT walk, my consultant, my doctor, my physio therapist will vouch for that…but no, because one face to face interview with a woman who could barely give me the time of day let alone see what I could or couldn’t do, my fate has been decided. I’m not entitled to it.
I feel humiliated.
I feel let down.
I wasn’t looking for a handout, I was looking for a way of regaining my personal independence.
Sadly, I know all too well that I’m not the only one in this situation.
I will join the ranks of those fighting for what they are entitled too.
I didn’t want to write this post but my Other Half insisted that I did, otherwise he won’t let me go to Blog Camp Birmingham on 21st May.
Now, I’ve been to Blog Camp before and loved it. It’s fabulous to catch up with lovely blogger friends and learn lots of new stuff about blogging…believe me, even an old timer like me still has lots to learn. I’ve never had a problem attending, but this year is a little different. This year will be the first year I go in a wheelchair.
I’ve already created a faff with the event location and the organisers. I didn’t mean to, I just asked about wheelchair access and one of the rooms is upstairs. It’s ok though, everything will be fine and I didn’t mean to cause any faff. I get it now, sometimes you mention disability and some places will jump through hoops to accommodate you. I guess it’s a shame it’s not all places, but I’ve never been one to cause a fuss.
Now, the nitty gritty and why my OH wanted me to write this post. I’m not very good in my wheelchair, my condition also affects my arms and hands as well as my legs and I find wheeling myself a little difficult at times. I’m worried that I’ll get in the way, run into people, get left behind, get stuck in a doorway etc etc. I’m also worried that I won’t be able to fetch myself a hot drink or food…and cake.. I wouldn’t want to miss any cake (or waffles.)
|The waffles at last years blog camp!|
Sooo, against my normal nature of I can do it all myself, I don’t need anyone, I just wanted to say that if you see me and I’m looking like I’m struggling or lost, could you give me a hand? I’m really not good at asking for help, and I’m not good at being fussed over. So I don’t want any fuss, I’m just asking for a little consideration. In return, I promise to do the best I can not to run into anyone.
I’m happy to talk about what’s wrong with me, but just in case you see me and you don’t want to ask here is a brief outline. On January 1st this year I was admitted to hospital with inflammation on my spine. I was paralysed in both my arms and legs for a couple of days, but then I began regaining some strength. I can walk but the inflammation has caused nerve damage and now my brain doesn’t communicate properly with the rest of my body. So my walking is slow and wobbly. The nerve damage also causes a lot of pain, which is constant and exhausting. (I may not make it to the end of the day!) This means each step I take really hurts my legs and feet. So, I am now in a wheelchair, with no idea if I will get better or not. The condition I have is called Transverse Myelitis and it is so rare it only affects 1 in 3 million people a year in the UK. I have a tab at the top of the page where I’m recording my TM journey.
My other half and I were looking at electric wheelchairs online. They are bloomin’ expensive, but we did find one that we could budget for before our holiday at the end of May. We were thinking it would be easier travelling on the train with our luggage if I was in an electric wheelchair.
Then I thought, why am I thinking like this. Our holiday is eight weeks away, I could be walking by then! When I first found out that I had Transverse Myelitis the first thing I did was turn to my friend
Google to find out how long it would take to recover. Google let me down. The results were all conflicting and there was no definite answer.
I then turned to groups of people who already had TM, but they didn’t help much either. Everyone had a different story to tell. It’s no surprise really, TM is rare with only one in three million cases in the UK every year. Lucky me, to get something so rare!
In my mind I made up my own recovery time. As the Occupational Therapists fitted all sorts of adaptations in my home to help me I was thinking, they won’t be needed for long. When my appointment was made to return to the hospital I thought they’d probably discharge me because I was ok. I gave myself eight weeks to get better.
Three months later and I know I’ve progressed loads, but I can’t live without those aids. I need them to walk, to shower, to go to the toilet, to get in and out of bed, to cook, to go outside and to get upstairs. I need them all still.
Our holiday is five months after my attack of TM. I was certain I’d be well by then. I even thought I could drive. So why am I thinking about electric wheelchairs? Have I given up thinking I will get better? Have I accepted that I won’t?
Is accepting my disability the same as giving up getting better?
My other half is staying on the worst case scenario side. He thinks I’m being silly when I say I won’t need help in a few weeks time. He hates it when I say I’m definitely going to get better. He’s trying to save me from disappointment. He wants me to accept this condition so I don’t get hurt anymore by not reaching my deadlines and goals.
I’ve accepted that TM is for life, I know it will always be with me. I can’t stop trying to get better, hoping that I will. I accept, but I will never give up.