Everyone knows when you are ill you are in bed and cant do anything. Obviously this example is great for someone with the flu but what about if you have a chronic illness, an illness that is going to last your lifetime. Are you supposed to just hide away in your house and never do anything again. In my opinion, No. One of the things I am going through at the moment is a period of adaption. I am learning what I can do with my illness and what I can’t. I am slowly learning that pushing myself when I am in pain is extremely counter productive, I am very stubborn so this lesson has taken me a while to learn.
This perception of being ill is that you have lots of time snuggled up in bed, just getting better – the reality is somewhat different. On average I have between 3 and 4 hospital appointments a week, my husband can’t take 3-4 days a week off work to accompany me so I have to get there on my own (or with help of friends), this in itself is exhausting, never mind the actual hospital appointments, the trials of different drugs, the different scans the results. Being ill is exhausting and time consuming. So my husband and I decided to go on holiday, to have a break from all the hospital appointment and to let the diagnosis of my chronic and progressive illness sink in a little bit as well as the results from the latest round of tests. After sorting out all the travel insurance to ensure that my illness was covered, in a twist of irony while we were away my husband that got sick. We ended up in hospital with him having suspected pneumonia and missed the last 4 days of the holiday. Thankfully it wasn't pneumonia and he responded well to antibiotics and we were able to get our scheduled flight home.
So just before we went away I got the results of my lower spinal scan, not surprisingly the news wasn’t great. I have a Pars defect, spondylolysis (sacral region) and a ruptured (slipped) disc in my lumber region L4-5. My consultant is certain that the spondylosis will turn into spondylolisthesis, which is going to cause the spine to slip forward from the lumber region. I am not sure what the next steps are at this stage, I needed some time to digest this information before figuring out what to do. Whist away I got up one night for the loo at about 4am (as usual) and I got hideous stabbing pain in my spine and felt something move in a way it shouldn’t. The pain continued for about 36 hours and then I felt what ever had moved out of place go pack into place. I think this was higher up in my spine than the other problems and in the thoracic region. So one of the next steps will hopefully be to scan the rest of my spine, so we can see what is going on.
As my wheelchair wasn’t going to be built in time we hired one, we thought it might be a good trial run and allow me to get used to it a bit, without being at home and frankly feeling the judgement of others. What happened was actually quite amazing and I hope will be quite life changing, I found I was able to do some things, in a wheelchair I could travel easier, without so much pain and exhaustion. We managed to see some sights and do a little shopping, while many people take this for granted, this was huge for me. Though I did have to concede to my husband pushing me, as although it was a self propelled wheelchair it was not set up in a configuration that was easy for me to use – I suppose this reaffirmed why we are spending a fortune on a wheelchair especially set up for me. I still needed some recovery time but I feel this might mean I can’t start to build my new life. I am not sure I am going to be able to go back to the life I had before but for the first time in 2 years I actually feel hopeful that I can have a life outside of my house.