Exactly as it says, slowly does it! I am finally getting back out there. I have managed three wheeling sessions, two handcycles, and three swims with gym, in 4 weeks. Not as good as I had hoped, bit also better than nothing! The post surgery TMR pain is now in full swing. At least I hope that is what I am experiencing, and there is nothing worse around the corner. All I can say is, omg… When my lovely surgeon told me to expect 6-12 months of he’ll, she wasn’t kidding. It’s like targeted crps flares. Basically like I’m being stabbed by a red hot poker. It can go on for minutes, but more often than not, it seems to be days. The worst part is that nothing helps. The boiling hot heat packs help with the crps flares, but they don’t seem to help with this new pain. So I have to wait until it goes! Pretty annoying. But, hopefully it will be over within the alloted time period? Fingers crossed for the lesser 🤞.
A successful wheel…
So, also, I’ve been privileged to take part in an article for Blesma magazine on TMR surgery. They have followed me through my surgery, and after. Should be fun to read. Not sure when it will be out, hopefully in the next one.
I must say, I will be glad when things are looking up a bit more. Although I know better times should be coming, I’m getting a little inpatient. There is so much of life I wish to experience, and so much of it depends on pain levels, and the predictability of flare ups. It is rather annoying, having to cancel things all the time. Having to cancel dates with friends, general appointments, and I’m yet to start at the track because I had a flare before my first session last week, which was so upsetting. 😢. I can’t wait to start. Maybe even compete one day? Who knows?
Lexi's journey through life as an elective amputee for CRPS. 
Hi Lexi
It was great to read your progress at the moment and you are getting out there, no matter what your pain levels are. Hoping that it will settle sooner than later. I was recommended swimming by my physio since my local baths have a hoist but going to wait a bit longer until I have more confidence.
I’ve made a big drastic road trip. I have had a holiday booked in Cornwall since last September and didn’t want to cancel it, so decided to brave it 441 miles from county Durham to Cornwall. Trying to remember to bring everything, slide board, pressure cushion, crutches and anything else. Journey wasn’t to bad making sure Brian my stump was supported all the way. Managed that part, but getting into the caravan was a bit of a pain only three steps to get up onto the decking but it felt like climbing a mountain. Decided to go up on my bum then bum shuffle along the floor 🤣 to the couch what a site. Only downside is my wheelchair doesn’t fit to get too the bedroom so having to use crutches 😕which I know isn’t a good idea. After about 4 days was wanting too go home I think I was admitting defeat. Wasn’t drinking enough because it was a pain getting to the bathroom developed water infection so every time I went to the bathroom couldn’t make it, Tena lady here I come 😁. Thank god its clearing up. Had to buy one of those bottles for women to pee in for during the night.
I’m just waiting for my compression sock to come through the post now, so hopefully that will get the swelling down. But I’ve been advised because one side of the stump is squared off it might not work and the may have to operate again. Just wish I didn’t have the crps in my stump but hoping that might settle fingers crossed.
After your amputation did you find Flo taken a while to settle down? And frustrated not being able to do things
Brenda x
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Hi there.
I’m so glad that you managed a holiday. Cornwall is beautiful. I have to admit, that although it’s not that far from me, we don’t visit it much at all. I had similar problems post op. I butt shuffle to my bathroom in the night. You eventually come up with ways of doing things which will suit you. I’d he careful of crutches. I only say that because I fell on my stump twice. I won’t use them now. Stumpey took quite a long time to reduce in size. Almost a year post op it was a quatre the size, but I could wear a leg then, and it shrinks lots when your wearing a leg.
My crps still gives me problems, but I’m trying to live with it. I’m in the process of trying to reduce my pain meds as they do nothing for the crps, and not much for the nerve issues from the surgery either! I think they are doing more harm than good!
I hope you find some solutions. It’s mostly trial and error. It took me ages to have the confidence to go swimming. I thought everyone would stare at stumpey, bit with my cover on, most people are pretty respectful, and once your in the water, no one cares. It’s also the best feeling, because you really feel like your standing on 2 feet again. It’s so odd. You’ll see!
I hope you made it home well after your holiday.
Lexi xxx
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Hi Lexi
Hope you are feeling well and staying safe. Hope you are getting a chance to get out and about and swimming.
Just wanted to ask you a few questions. The wheelchair that you use was that provided by the NHS or did you get your own? Just that I’m looking for a light weight one that I can get into the front of the car myself once the wheels are taking off. I’m planning on getting a automatic with the accelerate pedal swapped over ready for when I go back to work next year. At present I am using one provided by the hospital which is a Invcare which has good control and turning circle.
Also which are the best gloves to use? I got some but even though they are padded have no grip when self propelling.
Regards
Brenda x
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Hi there.
I’m glad your managing to get out and about. My wheelchair was eventually provided by the NHS. It took 8 months of fighting though, and only got it because they realised that with my crps , I would never be able to wear a prosthetic for more than half the time, so a wheelchair is essential. For gloves, I use workmen’s gloves. On ebay, I just put in work gloves. They are typically res and have black grip. They are amazing and grip really well. You can get waterproof ones, and even insulated ones for winter, which I rely on heavily. They are not massively expensive, but you will wear through them. I would try a sample before you bulk buy though, as some are better than others. I think I pay about £10 for a pack of 24 ish. I even use them I summer, and cut the fingers in half so they’re fingerless gloves!
I haven’t managed to get out too much recently due to my leg going a little nuts, but I wait for the good days, and use them to my advantage! I’m assured by my surgeon that things will get better I 6 months to a year! I’m hoping they hurry up a bit!
How’s your recovery going? Is your stump shrinking yet?
I hope you manage to get a wheelchair sorted. It is essentially your legs whilst your waiting for a prosthetic, and you will probably use one from time to time throughout your life. We all end up with sore days and blisters etc, where using your chair would be advisable.
Have a lovely afternoon.
Lexi x
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