This next blog is all about the weird and painful side effects my sister had to endure due to the medication she was on, the scary and testing year we have all had (which for some like my sister has been extra scary), but also how me and Sarah came to be doing this triathlon together, and even though we live in two completely different places, how we are supporting each other through our training and how we cannot wait to cross that finish line together!
So let’s begin where we left off, my sister is out of hospital and back home, but with an abundance of pills and medication she has to continue to take. March 2020 arrived with the news of national lockdown and my sister was told she is ‘clinically extremely vulnerable’ and should shield.
As a result of the intense treatment she was undertaking at home, she suffered with some serious side effects. The one that caused the most suffering was nerve damage to her feet. This was caused due to ongoing NTM treatment, which then caused erythromelalgia.
Erythromelalgia is a very rare disorder which is not understood. It is a nerve disorder, a vascular disorder and a pain disorder. It mostly affects people's hands and feet. Blood vessels stop working properly and they constrict and dilate, so the feet can turn from cold blue to red hot and swollen. The red hot flares cause extreme burning and pain. This pain was constant for my sister for weeks! She couldn’t move and couldn’t even stand up at times. The only way she coped was by keeping her feet in a bucket of ice water, both day and night!
For weeks she was only sleeping for around 1 to 2 hours each night, and ended up in a wheelchair in July 2020. This to me was the absolute worst thing I could ever see. A wheelchair seems to carry such a stigma around it and seeing your beloved sister go from being a healthy individual who would run triathlons and marathons to now being in a wheelchair was really hard to process. I was able to see her in the summer of 2020 when there was a brief break in the lockdown, and although it was such a good feeling to see her and be around her, it was really hard to see her in so much pain constantly.
As a result of this pain she was prescribed very strong painkillers and sleeping tablets to help her sleep. More pills to take!
I then booked a week of work in september to go and look after her. I couldn’t stand the thought of her being in so much pain and there was nothing I could do to help her other than be by her side.
Luckily, by the time I was travelling down to see her, on a coach for 4 hours wearing a mask (yuck!), she was actually starting to improve, and was able to do some walking in short bursts, and her mood was much better too :)
While I was with her for that week in September, which was the best week of the year by far! She had a video consultation with her doctor about these side effects, and they decided to stop the treatment as a result of the damage to her feet it was causing and the pain she was suffering. This was not ideal of course as the NTM treatment was being used to cure the infection in her lungs, but thankfully, the treatment at that point had worked and after tests, the infection in her lungs was gone.
We went on to have the best week together; going out for lunches, going on walks in the countryside, cooking delicious indian feasts, and things just felt like they were back to normal!
During all of this, from diagnosis to where we are now, I knew I wanted to do something to support her in any way I can, and as an avid triathlon runner herself, I decided I would take on that challenge in order to raise money for CF trust. I told my best friends about what I wanted to do, and after a short period of time, Sarah came to me asking if she can be a part of this.
Sarah, Abi and myself used to spend so much time together in London, at each other’s families’ houses and just generally as best friends, so Sarah was affected by all of this also and also wanted to help. I couldn’t be happier! Having my best friend run this challenge with me in order to raise money and awareness for this disease just means the absolute world to me, and we are super excited to cross that finish line together!
Jump to the current day, April 2021, and although we are in different cities, both Sarah and I are training and planning our triathlon together. My sister is back to running 10k and is thankfully over the worst of it! Nothing will break my sister, she is by far the strongest person I know and as I have said many many times before, she is and always will be my inspiration.
It’s now 8 weeks to go, and I am feeling nervous I won’t lie! But as I write this, I feel more and more encouraged to do my sister proud and kick up the training a notch! It’s so hard not to go to the pub each night, now that we can, and to sit in the sun relaxing with friends, but I must keep going!
Please continue to support Sarah and I with donating anything you can to this cause. We are super grateful for all donations so far :)
Thank you x
“I’m so proud of my sister and Sarah for doing this triathlon, but more than that, I am just proud of who they are. Sarah supported me so much when I lived with her, when I was first diagnosed, she was always there to listen and make me feel better! And my sister has looked after me in ways she probably doesn’t even realise. The week she came to stay with me was amazing, but as far as I’m concerned, she was by my side every single day last year.
Now they are doing this triathlon together, and it’s been a real release for all of us. A chance to reflect, but also a chance to turn away from the pain and anger, to look outside ourselves and help other people, and to finally get one step ahead of the CF – sure it’s with us, but it’s not leading the way anymore. It’s just coming along for the ride, and we can handle it!”
- My beautiful sister, Abi Howse
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