How much longer do I have to wait for knee surgery?

by Sophie

We have been out of lockdown a good few months now and mask use is dropping. However I am rapidly approaching my one year anniversary since I was first put on the waiting list to have my knees replaced – and I am yet to hear anything about a date.

I was diagnosed with Stills Disease when I was 19. Stills Disease is one of the lesser known branches of the inflammatory arthritis family tree with about 1 in 100,000 having been diagnosed with it. As well as the typical joint pain, inflammation, stiffness – it also has spiking fevers and rashes to chuck into the mix.

Unfortunately, my Stills Disease has wrecked absolute havoc on my joints in a very short space of time. I like to think I was diagnosed fairly quick considering my age etc – clearly it wasn’t quick enough. I had both hips replaced several years ago. My latest X-rays now show my knees have end stage osteoarthritis and the cartilage is well… pretty much gone completely.

Waiting to get my knees replaced is even harder than waiting to get my hips done. As this time I have a two-year-old daughter to contend with, albeit she is the absolute light of my life. As I have been on the waiting list for nearly a year I often wonder how long I can physically carry on like this. My go to feeling is I can’t be the mother my daughter needs and that wracks me with guilt every single day. I know she’s too young to understand but its a mum guilt thing! I’ve said it before and I’ll say it again – mum guilt is a REAL thing!

My life is on hold

Speak to anyone that knows me and they will say I am such a positive person, even through flares, diagnosis etc. That they couldn’t handle what I handle on a daily basis without losing it completely. However given the state I am in now I honestly don’t know where I am supposed to turn.

No communication from the hospital on extended waiting times and no indication on whether I’m likely to be waiting another five weeks, five months or even five years. My life is on hold and time is standing still. I want to have another baby with my husband. I want to save for a deposit to buy a house. I want to manage working more than a few hours a week from home. I want to cook a Sunday dinner for my family. I want to be able to take my daughter for a walk to the park. I can’t do any of that right now. I’m hanging on in there, but my mental health has taken a tumble more than it ever has.

The next step is getting my knees replaced. There is no plan B. When you only have a plan A that isn’t even within touching distance yet it can feel incredibly lonely and isolating. Never in my life have I been so withdrawn that I eventually ended up completely shutting myself off from the world. I felt defeated.

I’m glad I asked for help

A reality check from my husband (having a spouse who is a mental health nurse has its perks!) I now realise I wasn’t defeated though – I just needed to speak to my doctor and come up with a new plan to help my mental health. They were so helpful and I wish I had spoken with them sooner. I now try to focus on the positives in my life, with my little, strong family unit being something I am immensely proud of!

So, as we approach my 1st year anniversary of being put on the waiting list for my knees, it’s safe to say Covid-19 sucks! I will be sure to write again when I have better knowledge of a date. For now however….I am off to watch Frozen 2 for the 522nd time with my beautiful daughter and some make paper snowflakes! ❄❄❄

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