I’m really excited & some of you might be surprised at the reason why. Those of you that are regular readers will know that I have Ehlers-Danlos syndrome &, in a week’s time, I will be heading to wheelchair services to be assessed for a wheelchair. I need a wheelchair, but this decision hasn’t been an easy one to make as there is little information available about using a wheelchair for someone with a chronic illness.
I thought this post would be perfect to share with you today as part of my#HMSAware series to celebrate the Hypermobility Syndrome Association‘s awareness week. From the experience of friends & myself, a large number of people with one of the hypermobility syndromes who need a wheelchair have to make the decision with little to no input from medical professionals. I really hope this post proves useful to these people & provides others with an insight into the many different reasons an individual might have for using a wheelchair, either part or full time. If you want to know what it’s like to live with a hereditary connective tissue disorder, such as EDS, check out my EDS Symptoms Diary post!
So why is my wheelchair referral exciting? Because I am currently stuck at home, unable to get out of the house without assistance. This situation is not helped by the fact that I am medically unable to drive because of my basilar type migraine. There are many reasons why someone may need a wheelchair & so I thought I would share with you the reasons why I need one. I was worried about asking my GP for a referral, particularly as I tend to play my condition down. As a result, my GP didn’t know how difficult things had become for me. I’m going to lay this out in a similar way to how I presented the information to my GP in the hope this helps others who find themselves in a similar situation.
- Unable to walk for more than 5 mins due to pain & fatigue (the amount I am able to walk one month on is now much shorter)
- Daily difficulty putting weight on one or more joint. Some days joints in both legs or one leg & one arm (usually opposites) making it difficult to use my crutches
- To help with pacing. I was told by my Postural Orthostatic Tachycardia Syndrome specialist that I am deconditioned. I’m not sure whether I buy this personally, but I’m currently unable to do more exercise as it takes all my energy to get by day-to-day. A wheelchair would help with energy conservation & pain in lower joints, allowing my to do specific exercises that will be more beneficial than stumbling from the sofa to the kitchen & back again.
- I currently have no independence. I’m unable to go out without someone to help me. I can’t get to any of the places where I can hire a wheelchair or scooter because I’m medically unable to drive. I’m also not able to visit friends or get to appointments without help from someone else.
- I have become unstable on my feet. My knees are giving way & I am falling.
- On bad days, I am unable to move around the house.
I usedJo’s When’s The Right Time To Use A Mobility Aid post to help me put a convincing argument forward to my GP & to make sure I was not missing any vital information because of my memory.
Despite the above information, my GP was still unsure as to whether a wheelchair would be the right direction to go. She was concerned that if I had one & used it too much it could cause more problems. We discussed this & I demonstrated that I understood that not exercising enough & in the right way would cause muscle wastage, the complications this would cause me & how to prevent it. My GP still seemed concerned, until I pointed out to her that for the past five months I have had to hire a wheelchair or scooter when I’m out.
I’m planning on writing a post on my wheelchair service referral, so keep an eye out for that! I’m also thinking of Periscoping before & after the appointment with Dan. Is that something you’d all be interested in? My username is @whentaniatalks incase you want to follow me there.
Do you need a wheelchair? How did you make the decision? Did you receive support from a medical professional?
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Thanks for sharing :)
Thank you for reading, I hope it was helpful. Xx
What a brilliant post and thanks so much for sharing. I am so happy for you that you got the referral! Yay for more independence!! :) This week I made a big decision for myself actually– after a long time of thinking about it– and as of next week I will own a mobility scooter. I debated on this issue for ages because I can walk, I just can’t walk far sustainably. Some days I can wander around a shop for example, another day I might not. Some days I can push to do quite a bit more but that of course has implications. The truth is I still spend much of my time stuck in the house. I’m in that weird grey area of chronic illness where there will be days and times where I don’t need to use a scooter but right now the days I will outnumber those.
You put the reason why I am getting my scooter perfectly above. It will help me pace myself better. I will be able to get out and about more and do the things I want to without knackering myself. I can focus on exercises I can do and I’ll be able to work on building up my stamina more easily as I can say walk for 30 second intervals then jump back on the scooter (when I’m with someone) to slowly build myself up. I am definitely deconditioned and I hope I will get fitter and stronger but I don’t know what my ceiling will be. I hope one day I won’t need it at all but maybe I will, who knows!
All I know is for now it will make a big positive difference to my life and I hope the same will be true for you. Good luck!
Thanks Donna! I’m so glad you’ll have a mobility scooter, I can see it really benefiting you. It’s good that you’ll have days where you don’t need to use it, but the important thing is that you’ll have it for when you do so that you aren’t confined to the house. It’s really hard to see the same four walls every day & if I didn’t have my blog I think I would have lost the plot by now!
Good luck, let me know how you get on. Xx
Thank you so much for bring awareness to these conditions before this post I had little knowledge of this condition. I’m so glad you are able to get a wheelchair and finally get back some independence!
Jasmine :)
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You’re welcome Jasmine, I’m just glad I have a platform to be able to share & spread some awareness. I hope I’m able to get a wheelchair that’s suitable for me. My concern is that I’ll be given a standard chair which I won’t be able to propel myself because of the problems with my hands, elbows & shoulders. Fingers crossed I’ll be able to get something that’s lightweight. It seems that there’s a big difference in what is available depending on the area you live in, so I’ve no idea what to expect. Xx
This is amazing to read, it will be so good for you. For the past two years i have been stuck at home not able to go to my job due to major surgery and i had to be in a wheelchair for a while and crutches and it is hard. Being stuck at home you loose alot of independence. I hope everything goes well!!
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Thanks Emmy! I really hope I’m able to get something lightweight so I can gain some independence. My hands, elbows & shoulders are affected by my EDS too & I had problems when hiring wheelchairs from shopmobility after my knee op. I was so sorry to read of your accident, I hope things are improving for you even if only a little at a time. You really do loose a lot of independence when you’re unable to get out. I’ve no idea what we’d do if I weren’t able to have the weekly food shop delivered! Xx
Hopefully it will help you massively! Yes when i needed my wheelchair with my leg hardly anywhere would do ones with a leg raise on them or if they did they wanted stupid prices! My local nhs service had a long waiting list but i needed it there and then. Its useless! Big Hugs!! x
That’s so frustrating! The appointment couldn’t have gone better, though the process is going to be a long one. Xx
Thanks for sharing this Tania! I got my wheelchair in February and am very thankful it didn’t take the insurance company to much convincing and my docs actually offered it. At first I felt really weird about using it because I can walk, but between the EDS & POTS it makes counterproductive to getting any exercise to reduce the effects of wasting when I crash out due to activity tolerance, pain or syncope.
I’d really like to check out the before and after periscope. I think it’d be cool to see! Thanks, as always, for being a beacon in my chronic illness life!!! I am so happy that you got the referral!!!
I’m so pleased you didn’t have to struggle to get your wheelchair! Having one really does make all the difference to our independence. I seem to have come to a standstill with my referral, so I need to phone them to find out what’s going on. I’m so grateful that my parents have bought me a wheelchair to use in the mean time. I wouldn’t have been able to manage hospital appointments otherwise, let alone anything else!
You are more than welcome! I’m so glad we met on Twitter, you’re a fantastic lady & I’m looking forward to developing our friendship. Xx