The last three weeks have been a mixture of clear progress and big challenges, both mentally and physically.
Following discharge from hospital I was not in any pain when the foot was at rest. This alone was huge progress. However, when the cast was removed at the 8 day mark, it was a bit of a challenge at first with my ankle forced into 90 degrees in the boot.
Thankful though, that it was a boot and not a cast. The only reason for this is due to my lymphedema. A cast would be too restrictive and my ankle and leg would continue to swell and the pain would increase, if it went untreated while in a cast.
Despite all this, the Lymphedema pain has been increasing gradually. the story this tells is that the combination of regularly wearing custom compression, regular exercise, daily compression pump use and regular manual lymphatic drainage treatments was doing a fabulous job of managing the lymphedema and all its associated symptoms.
Things we have had to change
- Currently unable to wear my compression garment. The compression level I usually need to manage the lymphedema is too much for my recently operated on ankle and causes me more pain if I wear it.
- I am not allowed to mobilise the leg / foot / ankle at all. So the added pumping assistance of the muscles in my lower leg is absent. This means I need to elevate my leg pretty much 100% of the time.
- We have had to get a different garment to aid with the lymphedema swelling and pain. This one is much thicker (like a woolly sock) and knee length only/ the previous one was thigh high. It also has a lower grade of compression. Although this is predominantly meant to be a night wear garment, I am wearing it all the time during the day, under the aircast.
Current challenges
Despite the fact that I was actually worried the most about how the surgical pain would be managed, that has been zero% since day 1. The big challenge for me at the moment is the pain associated with the lymphedema. Despite continuing with the daily compression pump and regular manual lymphatic drainage, this has quite simply not been enough. The lymphedema swelling is significantly worse than usual and the associated pain is off the charts. It has made sleeping very challenging indeed.
Lymphedema pain
Mobility / PTSD
Not being allowed to walk or even put the foot down has forced me back into a wheelchair 90% of the time. A change that is seemingly as small as this (after all, I have been a part time wheelchair user for 5.5 years) has triggered my PTSD again and the nightmares have returned. As with everything PTSD related, the brain re-wired itself incorrectly following major trauma, so I do not have control of the symptoms at all. The best I can do is manage them when they pop up.
The positives
- I can now sleep with the boot off. This was something suggested by the surgeon early on, but any type of pressure on my foot, regardless of how light, was far too painful for this to work at first.
- Despite it not being something I am specifically working on right now, my ankle ROM (plantar flex and dorsiflex) has continued to gradually improve. This means that the occasional pain i would experience moving in bed is now negligible.
- My single leg sit to stand ability and strength on my left leg has exponentially improved (hahah)
- I have mastered crutches standing on my artificial leg and keeping the foot raised. I never thought for a second this would ever be possible!
- My hand biking is improving no end. Something that I started off hating with a vengeance (only doing it to keep my Zwift streak going!) is actually improving in many areas. My post exercise recovery is massively improved, my hand bike speed has also improved and my 5km time now is in a different ball park compared to my on the road parkrun 5km time!
- The numbers I am seeing in Zwift was depressing at first. Now they are starting to become motivating! (No, it will not replace 2 legged real cycling!)
Three weeks down, 5 more to go, and thats only till i can start putting some weight through it! God knows how long it will be till I am allowed to put a shoe on again!
