Mobility issues

[PickledGinger]

I have scleroderma, lupus, osteoarthritis, sero negative arthritis, myelopathy, antiphosphilipid syndrome and a bunch of horrible other stuff. For the last 18 months I have struggled around on painful joints and spent days sitting on benches whilst my family go off and enjoy themselves without me and at times been on my hands and knees in agony trying to keep up with them. I have sat in silence crying on the inside because it is so painful, and not wanting to burden anyone I have soldiered on.

This didn't go unnoticed by my family and they know I have been braving it out, so as a family we decided the best option is for me to get a scooter or wheel chair just for bad days and longer says (I will still paddle around as much as I can for as long as I can). However as a 49 I felt it was such a big decision I decided to speak to my GP for advice. I explained all my issues and unfortunately her response was ‘you're just being lazy’. LAZY!! I have been in bits all day and now feel guilty about getting support. It is hard enough getting people to understand how hard it is to live with an invisible illness and suffering in silence because no one believes you and now I have a GP who hasn't the faintest idea of how tough it is.

I genuinely don't know what to do now, my family are fuming and I feel guilty and self conscious, has anyone else been through this same dilemma and can offer me some advice.

[Rosepetal60]

In no way are you Lazy. You definitely need to change your GP within you Surgery or find another surgery. And it’s time to do some research on Types of Mobility scooters and wheelchairs. Yes, much research needed on different types etc. Can be interesting

[Hidden]

You're not being lazy!

A scooter will let you join in with your family, have more independence and just feel better. It took me a long time to accept a scooter would help me, but now I have one it's great.

I don't always use it, but if there's a lot of walking, or just a long day out I will use it. I enjoy myself and so do my family as they know I'm with them and happy.

You might not need to use it all the time, but it gives you the choice!!

You can go and try them out in your local motorbility shop, or anywhere else that sells them, see which one suits you and your car. Have fun shopping.

[Goldyukr]

I am so sad to hear you have been treated that way! I am also 49 and this year have had tremendous mobility issues as well. Part osteoarthritis, part all other things. We have a local ASL clinic that recently opened to all neuromuscular illnesses and I was referred there by a friend. When I saw the occupational therapist and the mobility representative, both recommended a scooter as well so that I could be more active. Honestly, I have not yet pursued it as there are insurance issues, but I was relieved my GP was totally on board. Would it be worthwhile asking one of your specialists instead?

[marilynmcl in reply to Goldyukr]

Insurance for a mobility scooter can be on your house insurance . But, check it out to be sure on this.

[marilynmcl]

Definitely agree on getting a change of G.P. and I have terrible osteoarthritis in my knees and ankle with nerve damage to my leg and my feet. So, get yourself what can make your life easier and not isolated from your family life. I have both scooter for the car and a wheelchair for when I need to be pushed into places too narrow for scooter travel. Good luck and take care.

[Vtoria]

I'm so sorry, I to share your story one day at a time