Well the good news is that I have had no emergency trips into hospital this week, only planned appointments. I had a brain and cervical spine MRI which I should get the results in a couple of weeks. I saw my cardiologist, who is still hoping that coming off a couple of my medications will help with the bradycardia. However my heart rate is still low and I am feeling quite dizzy. Unfortunately coming off the medication has also caused an increase in the pain. Thankfully I also saw my pain management consultant on the same day and he has some idea about different medications. I thought I was taking the strong medication, with various opioids for breakthrough pain, however he is talking about a whole new level of pain meds. Which if I am honest, I find a little intimidating, I don’t want to end up being dopey all the time because of pain meds. Thankfully my consultant is amazing and he understands that, now we know that my condition is permanent he is also looking at putting me through a pain management programme which I think is a good idea as it is more about ways to cope and ways to live my life despite the ehlers danlos. I guess as this progresses I will have to look at the really powerful medication for some occasions. My hair has started falling out again, I dread to think what stronger meds will do.
Next week I have the full spine MRI and overall physio assessment which will also be a proactive appointment about protecting my joints and assistance to help me live my life. The idea of a wheelchair has already been banded about, for part time use, when things are bad and when I want to go somewhere. This is an idea that I am still getting used to but I am trying to view it as a positive thing. A couple of weeks ago I went to a furniture store and the walk around the store was excruciating by the time we left I could hardly walk and it took me about 4 days and a lot of medication to recover. This wasn’t a long walk but maybe with a wheelchair, going round a shop would be possible, without so much pain and without the need for medication and recovery time. When I started to think of it in those terms I started to think that it could be positive and that I could do things that I haven’t been able to recently.
I have been doing some research online about wheelchair use and I find it fascinating and quite sad how society views wheelchair use. It seems to be very black and white, i.e. you are either able to walk or not. It seems society really struggles to understand part time wheelchair use, unless it is for the elderly. For example Cherylee Houston who also has ehlers danlos and plays Izzy in Coronation Street received a massive backlash because in an episode a few weeks ago, you saw her take a few steps – how dare she use a wheelchair when she can walk a few steps! This attitude is insane, if someone can walk a few steps but it causes them a huge amount of pain and takes them days to recover, doesn’t it make sense to accept a little help. My best friend and I have been talking about going to bath for a day out, but I know how much pain it will cause me and how much recovery time it will take, so for about a year I have been taking a rain check. If I was to use a wheelchair then all of a sudden this because a possibility for me, but according to society I can walk so I shouldn’t have to use one so maybe I should stay at home where I can manage. Never mind a social trip out, getting to some of my hospital appointments on my own is almost impossible because of the travel and even with my husband taking me it still takes a huge amount of time to recover from the trip. My life has been on hold for 20 months, I don’t care what society thinks, I want to start to try and regain some control of my life.