Tag: home adaptations

The surgery diaries: How it all began

The day I found out that I would actually need the surgery, I cried. I’m not proud of it, but I did.

It wasn’t entirely unexpected. My consultant and other doctors had been trying a series of other treatments to help me for ages, but now that I had stopped growing it was decided that it might be time to consider some operations. So, off I went for something called a gait analysis where the way I moved would be thoroughly analysed at a special clinic, after which a report would be complied suggesting what they thought would be the best course of action. After the tests, my family and I all talk of “ifs” and “maybes”, but really we all knew it was a case of “when”.

Thankfully when the results did come through, the doctor who was dealing with this part of my treatment called us at home first to deliver the news and asked us if we could attend an appointment. Like I said, I burst into tears. I felt like I’d failed for being the one that allowed my knees to twist in the first place. Then, I felt ashamed for crying because I knew that I wouldn’t be out of action for all than long, and I was already so much better off than so many others. I felt all this within the space of about a minute. Then came hugs from both my parents who told me that it was perfectly normal to feel both of these things, and that was why the doctor had let us know so that we could have some time to deal with the idea.

Like a good girl I sat and came up with a list of questions to take the appointment but really the answers wouldn’t have made a difference. I already knew that I was going to agree to whatever they thought was best for me. I couldn’t deny that my aches and pains had got worse over the last couple years. Because of how I was standing I was getting migraines that I was given pain killers for and, at the around the time the I first began meeting with the man who was to be my surgeon, I was having intensive physio on my shoulders. It wasn’t just about my legs anymore and if someone was offering me a way to make the things a bit better I was taking it.

The next couple of months passed by in a whizz of appointments and a blur of revision. I was due to take my GCSE exams (the ones you take at the end of highschool) in the summer so that had to be my main focus. In fact I didn’t really think about my operations at all for ages. Then, one day, in the middle of one of my science papers, it hit me. Oh, God, two more to go then I’m going into hospital in two weeks PANIC!!

Somehow, I still passed the exam.

If I’m honest the enormity of what I’d agreed to didn’t really hit me until I had an appointment with an occupational therapist at the hospital about getting the house ready for my new needs. There were talks of installing a ramp for my wheelchair, and providing us with a remote control bed that would go in our dining room, which would be my room for the next few months because I wouldn’t be able to get up the stairs. This also meant that I wouldn’t be able to get upstairs to use the loo either. Great. That would mean I’d be using a commode for most of the time. I’ll let  you fill in the blanks on that one yourselves.

This didn’t make me feel better.

I spent the rest of the day apologising. It was then that I realised what I’d signed my family up for too. Oddly enough, they didn’t look anywhere near as repulsed at my impending inability to reach the toilet as I did. They just wanted me to do what I thought was best.

That day, I realised just how awesome they all really are.

Thank goodness for my walk-in shower

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My walk-in shower

When I woke up this morning I was a zombie, there really is no other way to describe it other than that. My legs and back had decided that last night they were going to Tag Team against me and ache so much that they would keep me awake most of the night. Next time they plan on doing this, I hope they tell me so I can have an afternoon nap first. Despite their best efforts I think I managed t catch somewhere between three to four hours of Zs  which is not so great –especially when one of those blissful hours was between 7:30 and 8:30 this morning. I’d have loved at least another half an hour but I have lots to do today so I didn’t really have a choice but it suck it up and get on with it. All I can say is, thank goodness I have a walk-in shower.

For a long time, showering was something that my mum had to help me with because we didn’t get the wet-room installed until I was around 17 or 18.  From the age of around 15 I had other things that would help me to get washed by myself including a swivel bather and a bath board, but before that mum had to lift me in and out of our bath shower, and stay there with me to make sure I did slip. This did happen a couple of times though, given that my balance is less than good, especially on a bad day, and it also meant that my daily wash was done whenever mum could fit it in around all the other household chores. Now I can do it whenever I like, which is something I will never take for granted. It takes some pressure off my mother too. I’m grateful that she used to help me all the time (she still does wih some things) but I’m sure this is one thing she’s quite happy about not having to do anymore.

Thanks to the wet room I can just stroll in (quite literally) whenever I like, plonk myself down on the seat and stay there until my aches and pains have gone away, or until I feel human enough to bother facing the day. It works too. My legs aren’t as bad as they were first thing today, I’m half-awake and I’m sitting here writing this post. Not bad, eh?

Like most things in life, getting the wet room installed was a trade off. It meant that we had to get our bath taken out which was really useful on the days that I was stiff and the shower doesn’t work quite so well for that, but at least I have my independence. There is the odd day that it decides to get blocked and flood, but the bathroom is designed to handle the water. It just means we have to do the mopping up afterwards.