I had my first “weekend away” since I have had my spinal cord stimulator and it tied in exactly with the first anniversary of my stay on the St Thomas’ pain unit 2 week course. We were actually on a trip to Exeter for the sixth form student to visit the university, but as it fell during the half term holiday it seemed a good excuse for a few days away. Those of you who have been following for some time may remember my last weekend away trip to Bournemouth shortly before my stimulator trial. It started with a bad fall in the car park on arrival and involved a mad, pain ridden 3 hour drive home at 2 am, with me literally climbing the roof of the car on our first nigh,t as I hadn’t taken the right pain meds away.
This time Duncan informed me, after we had been on the road for half an hour, that he would not be doing an emergency drive in the night from Exeter to Surrey! Car journeys are not easy for me, like I imagine for many with pain & disability. The confines of the car seat, the seat belt and the inability to change position is a nightmare with back pain & a spinal fusion. My stimulator makes the pain more bearable, but as we are forbidden from driving with a low frequency “tingly” stimulator switched on, I am unable to drive myself. Not forgetting the EDS. The difficulties of turning a dodgy neck and shoulder dislocations hindering manoeuvring the steering wheel do nothing to make driving easier…or safe! With a couple of stops along the way, a dead leg and some very costly motorway coffee, we made it and actually drove into glorious weather.
Whilst Duncan did the uni tour, I was planning a spot of sightseeing and retail therapy with the lovely girl. One thing everyone tells us spoonies is that we need to pace ourselves and sometimes it can be pretty difficult to realise our own limitations. I knew that a full day visiting the university and attending talks would be too much for me, but I thought that a few hours out with my daughter was just what the doctor ordered – excuse the pun! She needed reassurance – she was worried that I might fall or faint and that she wouldn’t manage by herself. Goes back to that evening in Bournemouth when I fell as she tried to hold me upright and she ended up on the ground with me. So when we bought sandwiches for lunch and made our way to the green by Exeter cathedral, I was absolutely forbidden from joining the hoards of students lying on the green soaking up the sun!!
She was probably right – I doubt that she would have been able to get me up again.
Exeter is very hilly. Isn’t it odd how sometimes the very act of maintaining our independence actually renders us more disabled? In this case it was my desire to walk, which is very limited at the best of times, that left me in more pain and thus slowed our progress considerably as we tackled the hills of the city. The frustration and stress involved in attempting to be “normal” just increases pain and is frankly exhausting. Our progress back to the hotel was painful in so many ways and the guilt that I felt as my slight teenager held me up descending a steep hill was awful.
I have started to accept that whilst I really don’t want to make myself more disabled – if that makes sense – that if I were to be using a wheelchair for certain situations that I might actually feel less disabled: I wouldn’t be increasing my pain with every step, my walking wouldn’t be getting slower & slower, my family would not be worrying and I wouldn’t feel the guilt for their wellbeing. In short, I might be able to enjoy a day out and actually have some more freedom.
There, I’ve said it – never thought I would, but hiring a chair might be on the cards for our week away next month. Any suggestions gratefully received!
PainPalsBlog 
Hello fellow pain warrior. I’m sorry you are suffering. I was wheel chair bound for a few years because of my spine injury. I can feel your emotions please do not feel guilty. I know the last thing we want is to use a chair or any assistive device. I know the feeling of guilt all to well. Please know how strong you are. Every step you take is progress and growth! Using that chair for to help you is okay Hun. Sometimes we need help. It’s better to use it then push so hard and up in sever pain and worse condition. It’s better to use it go out and enjoy yourself than suffer in pain and tears. I am gratefully walking but there are times that I’ve had to use the chair. There’s nothing wrong that. I know it’s tough to accept but you can still go out and enjoy yourself and you’ll be in less pain! Don’t worry what others think. It’ll be easier on your family and it’ll be a beautiful day! Sending you positive healing and a great day and a wonderful time away!
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Thank you so much for taking the time to read and for the words of encouragement. I’m not sure that my able bodied friends always understand how the trade off between walking and pain! xxx
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I’ve learned they don’t always understand because they don’t know what we are experiencing. They don’t have to! You have to do what’s best for you. You’re living with the pain. You’re doing the best you can that’s what’s important. Give yourself more credit! Don’t put yourself in pain for anyone. Whatever it takes including a chair temporarily go out there & live. If they are you’re friends they’ll see you the one who doesn’t give up who’s doing everything to be there not the chair. Xx
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I definitely vote for the wheelchair! It will be so much easier for your family and you will have less pain and fatigue. I currently, thankfully, do not need one but it was really helpful, as are scooters, which in the US at least are rentable. I wouldn’t have made it through Disney World without one!
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Thanks for your kind words of wisdom! C x
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One thing I have learnt from a similar situation, is that pain is pain. If some thing will make it easier no matter if it is a wheelchair and you actually get to enjoy the places you wanted to, then do it. You deserve it. Pride is a crappy thing at times and it makes me feel guilty for similar instances where I have declined a mobility scooter on a day out because someone must need it more then me. This is not strictly true. In the end you forfeit your happiness for the pain. I missed out on so much. Don’t let that happen to you. I hope you find your happy medium and enjoy things when you have the opportunity to do so xx
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Thank you – you are right, pride is a crappy thing and ends up making everyone’s life miserable. I appreciate your support C x
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I use a wheelchair on holidays and days out, it took me a while to get used to using one, but like you say its making you less disabling being in less pain if you were to use one.
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I love your comment that a wheelchair will make you life less disabled at times.
I believe using any type of help we can get is worth it. I use a walker, sometimes I may not need it when we start out, but I might need it while we are out, so it’s there for me. It has a seat so I can sit down and rest. It helps me when I’m off balance. I’m proud that I realize that this makes me for independent. I’m not ashamed nor do I feel embarrassed or that it shows I’m disabled. It helps me in being able to do things I normally can’t. Isn’t that what these aids are for?
And when I’m bad off, yes I will use a wheelchair if one is available. If not, I’m often tied to a chair at home. That isn’t independence, and it makes my husband worry much more about me. I always use one when I travel, in airports and such. Not that I travel very often. 🙂
You are simply so very right, an aid, any type that can help us, makes us less “disabled”.
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Hi Claire,
Our mutual friend Karen pointed me in the direction of your blog and I’m so glad she did. I have EDS 3 (diagnosed last year after 23 years of symptoms – you know the score!). I’m so sorry you have to deal with the general sh*te that EDS brings… I utterly, utterly sympathise!
I just read your post about ‘admitting’ to feeling that a wheelchair would make your life easier when getting out and about. Reading that has really hit a nerve with me as I literally said the same thing to my fiancé on Saturday as we walked through Regents Park. I just *had* to sit down, and we hadn’t even walked very much. I also have POTS, so walking just leads to blood pooling in my legs and feet and I feel as if my legs are made out of heavy rubber. If I was in a chair, I could go out for a whole day!!
The funny thing is that in writing this, I’m realising almost for the first time just how affected I am. It doesn’t occur to me that other people don’t have to sit or lie down after an hour of walking around shops… If I have a hospital appointment in the morning and make my way across London, my fiancé often wants to go to a museum or a gallery afterwards, and I just can’t do it – the very idea of standing for longer than I need to or walking slowly through a museum is unthinkable, as much as I would love to go… But if I was in a wheelchair!! Oh the possibilities! I could shop and shop… I could visit that photography exhibition with my other half. I could go for walks with my family, instead of always being the one to stay at home.
I understand the difficulty in ‘admitting’ you need help to get around. Part of me would feel like a fraud if I used a wheelchair. I always thought chairs were for people with paralysis, or severe arthritis, who couldn’t take a single step on their own. What if somebody saw me getting up out of my chair and taking a few steps? Would they accuse me of faking? I’m now slowly realising that disability (hate that word) has many faces.
I just had to say that there is no shame in admitting you need some help to get around. These things are invented to improve people’s quality of life, so if we need to make use of them then it’s okay! I’m saying this for myself as well as for you…
A wheelchair isn’t necessarily a sign of disability, it’s also potentially your key to a better quality of life and more freedom to explore the world!
I
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Hi Georgina, thanks so much for getting in touch and for your kind words. We bendies need to stick together, particularly as the other lesser known problems associated with the syndrome surface. I am certain that my chronic back and subsequent pain probs all stem from EDS. Keep in touch! C xxx
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Hi Claire!
Absolutely – all the puzzle pieces start to fall into place when you get your EDS diagnosis…
One of the best articles I’ve read about EDS is by Alan G Pocinki – it’s written for laypeople as applaud to medical professionals and talks about some of the myriad ways EDS can affect a person. It’s a very interesting read.
Have a look:
http://Www.dynakids.org/documents/hypermobility.pdf
X
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Okay, that link didn’t work! Try this –
Click to access hypermobility.pdf
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Thanks, will have a read! x
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