2005....... I had my next MRI. Nothing had really changed much, even though I had declined somewhat. Things just steadily kept sneaking up on me and I suppose, I just learned to adapt to the minor changes. I also found I was in a bit more pain than I’d ever been before. I had to cut down the hours spent on the computer and rest in between. I had to plan my outings around my good days as I couldn't sit up for more than a few hours at a time as I would just become too sore. Sometimes it would work out, other times I would have to leave early. I just hope that I didn't upset anyone, sometimes I think they don’t really understand, in some cases it’s just easier that I don’t go at all. It’s a bit like that now, the effort and stress it takes to go out only to return a few hours later, if that, isn’t worth it. I end up paying for it the next day and most of the time I don’t enjoy the outing anyway.
2007......... I went for another MRI and found out that there was nothing too drastic according to my NS. The cyst has grown only about half a centimetre since the first MRI was taken. Not very much according to my NS, he was actually impressed I was able to walk into his office. Well I say walking because I was standing with help, but you couldn’t really call it that. But for the want of a better word or description, we’ll just say it’s walking just for the sake of it. He did mention he was glad he hadn’t operated to drain the cyst when they first found it as I may have not had the same quality of life if they’d operated. That didn’t sound very encouraging, but I understood what he was saying, although it didn’t make me feel any better. I felt like I was going downhill and I wanted to slam on the brakes before I hit the bottom but “the breaks ain’t working man!” and the decline is getting steeper and there doesn’t seem to be any hills in sight, not even a little one. And even if they could build a little hill, with no brakes I could still veer off track and end up in a heap. So despite my slow descent I’m told that for the time being I do not need to have any more MRI’s unless something drastic happens in the meantime.
The end of 2007 and the beginning of 2008 was a bit of a bumpy ride. I was in a bit more pain and needing extra help to get around. It was very much up and down and I felt like I was on a knife’s edge with nowhere to go. The notion of using a wheelchair was looming over my head – like a noose around my neck – ready and waiting. The concept of a chair itself isn’t the problem, in fact it could be of great benefit – independence and such in the short term. But it’s what it represents for the long term, I felt like it would mean that I would be heading down a path of no return. I thought things had been difficult in the past but I know the consequences of relying on a chair will bring on other more complicated health issues.
2008…..struggling to just keep using my walking stick, I resided to using my scooter indoors. It was ok for a while but I know this was a short term measure. Living in Australia, the government helps out with disability equipment, such as wheelchairs, hoists and even home modifications. In my case I was given a power-chair according to my needs. In order to do this I was assigned an OT (Occupational Therapist) who puts in a report with her recommendation of my physical needs. Then the government suggested that I trial different types of wheelchairs over a few weeks, to see which type and features are right for me. I also had a team of specialized people to work out my seating, to make sure I wasn’t in danger of any skin break outs and the sort. This all took quite a few months coming and going to the seating clinic. Getting this part right was difficult because of my spinal shape and not sitting up straight like most people. Once the OT was happy together with the seating clinic, they put in a claim. Once the government accepts and agrees with their recommendation, I was put on a waiting list. I was told this could take up to a year or more, it also depended on how urgent it was. . .
2009…….I was managing with the scooter indoors and it was a fold up type so I could put it in the car and use it for shopping and going out. It got really tiring and uncomfortable at times with the scooter, so I mixed it up a bit. In the middle of the day I’d have a 2 hour break and stretch out on my bed and if I was lucky I’d catch 40 winks. I was in a bit of pain more than I care to admit, and I hoped that when I got my power chair it would have improved. In July I finely made it to the top of the waiting list. Then it was just a matter of having everything adjusted and customised for me. It was September before it arrived, and I nicknamed it, “the black beast”. It reclined, tilted and raised my legs, I pretty much got everything the OT asked for. Over the coming months it was a long trial and error getting my sitting position right. If we fixed my back rest I’d have problems with the cushion, fixed the cushion I had problems with the back rest. Anyway the pain was sometimes better sometimes not, the seating clinic came out for home visits to make adjustments, which was called The Out Reach Service. It was hard booking a disabled wheelchair access car to take me to the clinic, they were never available when the clinic was. Anyway I was able to transfer in and out of the chair myself. By the end of the day I was happy to get into bed, but by morning I was also glad to get out of bed. It seams I’m not really comfortable anywhere. The only good thing about the chair was I could recline and stretch out when I wanted too.
2010……. I was still getting my seating right, it got better for a few months then I got sore, and I needed some more changes. I think what was happening was as I got a little worse I needed more adjusting. At that time I needed a bit of help with transfers in and out of my chair, the pain came and went. I had resided to the fact that I was not going to ever be pain free again, pain relief helped but not totally. I used to have a painless and restful sleep, not so anymore in those days. It was getting difficult turning over in bed, putting a lot of strain on my muscles, and waking up sore and stiff. Sleep was the one thing I enjoyed, the only way I could get away from myself. I couldn’t even sleep in anymore. It was suggested that I get an electric bed, and more trials but I love my water bed too much. I was doing some researching online for slip-sheets, it helps you to turn over in bed easier. I trailed quite a few different types, some worked, some didn’t, some where too hot, and some would bunch up under you. I gave up but then I found this sheet called “a wonder sheet” it is like a normal sheet with a silk piece sown in the middle, and that helped.
2011…….That last year was a tough year, but I suppose I’m still here, not sure if it’s a good or bad thing. The seating clinic only came out a few times in 2011 I think for then it was the best we could hope for. I have been just barely bearing weight on my legs, but I’m grateful that I’ve managed to take care of my own personal needs up to now. Bearing weight is important to keep your bones from going soft and breaking. So once I’m not able to stand, I’ll be giving up one set of problems for another whole new set. I went back to the spinal specialist for a check up, he was happy with me. He suggested I go back to see my NS for an MRI update, it’s has been quite a few years since I had one. I’ve been putting it off, and I’m not looking forward to hearing that the cyst has grown. I don’t think he’ll have anything new to add, other than the obvious. He did point out there might be new advances since I last saw my NS. So I probably get around to going in 2012.
2012.....Well again another tough year....its funny I say that every year and I suppose I'm beginning to realise that the slightest changers are now having a bigger impact on me than ever before. Those goal post's are moving every year now. I started the year off in a lot of pain and having it investigated as to the possible causes. MRI and other test's didn't really indelicate any growth of the cyst or Tumour which is good. My Doctors believe that the long term effect of the radiation therapy is playing a larger role now than the cyst and tumour. Also the change of life has muddied the waters, it has weakened my muscles. I am now no longer able to do transfers on my own, no longer able to take myself to the bathroom. I've finely crossed the line, the line I was trying to hold back and it will never be quite the same again. I am now needing to get outside services and equipment, it took almost the whole year to organise these services and equipment and having some dark days in the middle of it all. Like someone said "it's not the end of the world" yes she's right, and I agree. But to me it represents the beginning of another more difficult faze of my life I was hoping to put off or not face at all. I'm not looking forward to what's coming ahead. I'd be happy for it now to remain as is or just stop, I'm getting very tied of the struggle. I'm hoping that 2013 will be calmer in this regard and have some services in place.