Home. Day 35-40 27th April- 2nd May

 This week I’d like to discuss the importance of support.

It’s been an excellent week in terms of Sepsis awareness. I had a message from a lady who, like me, had also survived Sepsis but only found out from the blog about the Sepsis Trust and the support that is available. While it’s good to know that the blog can go a little way to helping others, it’s a shame that patients who leave hospital following any condition aren’t routinely given information on the various support groups and organisations out there for them. That awareness could not only help them but also maybe ease the strain on NHS resources further down the line.

I’ve said previously that I’d like the blog to be an honest reflection of the day to day challenges amputees face and one that I hadn’t yet come across was  Health and Social care assessment. This week I was the subject of a discussion between two departments on who would be responsible for my ongoing care. I’m not going to use the blog to dissect the whys and wherefore of Social and Healthcare policy but I would like to highlight how that process makes the subject feel.

To sit and have to quantify your level of disability is actually quite demoralising and at the end of that process, to be told that despite losing both your arms and legs your mobility needs are only moderate, your  pain level is moderate and as you’ve only had a history of one fall, your risk of fall is only moderate, you are left at the end feeling like a malingerer. It’s the first time my condition has ever been played down to me and in some ways almost trivialised.

It had a huge impact on me and left me feeling very demotivated. This surely is the opposite of what a meeting to reassure me that my future needs would be met is supposed to do.

Thank goodness I do have fantastic support around me and one of the groups I am a member of on Facebook, The Quad Squad, put me in touch with a fellow Quad amputee in the States to discuss some of the challenges he was facing trying to obtain a Bionic prosthetic. Mitchell Archer  was incredibly generous with his time and it was great to speak directly with someone who understood what it’s like to be a Quad. Thanks so much Mitch and looking forward to catching up soon.

One thing that did come up was how impressed Mitch was with was how much I was able to write in the blog. He said he found it tiring trying to type so much. I admitted to Mitch, and just to explain to you all, that David actually types up the blog for me each week. We make notes throughout the week and at the end we sit down together and review what went well and what was not so good. We decide what to put in the blog and what to leave out and then David types up my final thoughts for me. It’s actually a really good way for us to share our experiences and communicate with each other about this crazy period in our lives. It might not be right for everyone but it works for us.🙂

And finally ( Yes, I know, another long one this week...) my mood was picked up further with the support given by my Therapists Rachel and Kelly who worked me really hard this week but helped me achieve so much. Again, I was left absolutely shattered but so happy with the things they had adapted for me in their own time and the things  they had helped me learn to do for myself, like pulling down and pulling up trousers and pants. A real benefit for those of us who don’t usually wear dresses!🙂

It’s having a support network that is key in coping with any challenge. Thank goodness I have a strong one around me 🙂

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