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.
It must be so tricky to plan ahead. I know the days my arthritis is bad i find myself thinking i will never have a good day again, and when it is feeling really good, i find it hard to think i will ever be in pain again. Whereas the reality is that there will be ups and downs. I think your other half is wise to be thinking of contingency if it will make things easier for you but of course it's brilliant to be staying positive to be walking by then. I'm sure you've probably considered it but if there was somewhere to loan or borrow one to lower the cost if it is a temporary solution? x
yes, we've thought about it, but the deposit most places ask for is really expensive. I have a manual on loan from a friend at the moment because even loaning them is expensive. You can't afford to be disabled these days. I know what you mean about good days and bad days too, that's what it's like with Star. Sometimes she seems perfectly fine, but others we just strike off as she's not going anywhere. xx
Never give up is a good motto, but be kind to yourself is another 😉 there's no harm saying that you may be more recovered but not fully recovered, so the electric wheelchair is just a bit of comfort for times of need… of course we all hope there is no need for it, but be like a scout – be prepared 😉 x
I just wish their was a timescale on this so I knew what I was in for! Trust me to go and get something so rare that no-one has a clue!
I agree with Steph that you shouldn't give up, but you also need to think of your own needs and be kind to yourself. I also don't think acceptance means giving up in any way and wish you all the very best.
Thanks, I do need to think of myself, but I'm thinking of my poor partner too who is exhausted pushing me around.
I think it's great that you are being so positive, but if you need a chair in a few weeks time, it definitely doesn't mean that you are giving up. Take care. Emma x
I do have a very positive attitude. Thanks x
What a wonderful attitude to have! You seem so positive and I know it must be difficult to see the realities of your condition. Purchasing something to help you when you need it is in no way giving up! Sure, you may be walking in 2 months time, but it's good to have the help when you need it. I've come to the realization that 'It's better to be safe than sorry' is quite true. Be kind to yourself x #binkylinky
Great attitude. Keep on working hard and good things will come, but first and foremost you need to take care of yourself
My mum has to use a wheelchair but recently she has been using it less but knows there will be days she needs it. At first she didnt like it but she accepted it thing is, she used it every day for months until recently so I wouldnt say acceptance is giving up I like to think its a case of "right this is how things are but here is what I can do to keep going" you have a fantastic attitude keep going xx
I am so sorry to hear that you are unwell. Have you thought about renting a wheechair – My dad works for the red cross and they hire out all sorts of equipment for a minimal charge. It came in very handy when I needed wheels and crutches for a while. Hope you get something sorted soon, it is best to be prepared!
I definitely don't think you're giving up but I would imagine you'd feel a lot better knowing you had the electric wheelchair just in case you needed it. I'd do anything I could to try and make my life easier while trying to beat it if I was in your shoes x
You have an amazing strength of attitude! Positivity can be hard to hold on to but it is essential in helping yourself to feel better. I hope you have a wonderful holiday, with or without the electric wheelchair! Xxx #binkylinky
It's not giving up at all. It's being strong and positive, and seeing light at the end of the tunnel. Thanks for linking up to the #BinkyLinky
Stay strong and I'm sure it will work out Thanks for linking to the #binkylinky
You have to look after yourself and do what is best for you, accepting that you need help is all part of that and it is definitely not giving up! I really hope that you do start to get better very soon xx
I think you have to have a positive outlook like yours, but with a backup plan like your husbands! I hope you dont need the chair by your holiday, but if it gives you the ability to enjoy yourself more than you would otherwise then go for it – it doesnt mean its forever!
Be kind to yourself xx
You've such a wonderful outlook on life
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