I realise that I have been deathly quiet in regards to my writing recently but unfortunately I have been really struggling with well, everything.
I have been finding that the trembling in the legs is becoming increasingly worse. Standing is becoming extremely uncomfortable and impossible to do for very long as I am feeling the severity of the tremors and the buckling of them whilst queueing or whilst completing the washing-up for example. With regards to standing, it has been evoking anxiety as I am always afraid that they will suddenly give way, which has been happening to much embarrassment. It was not until I was speaking to a person who has similar problems to myself, that using two crutches maybe more beneficial for myself than using just the one as it offers increased stability when standing and walking and reducing the risk of falls. I loved the idea of being able to save myself from falls as because I have been experiencing so many of them my bruises have bruises!
The owner of the gym even kindly let me borrow a couple of the crutches that have been donated to the Feelgood Factory. Unfortunately, after using them for a few days around the house and even once whilst out with my carer, I have decided that this option is not for me as not only have I found using two incredibly awkward and uncomfortable, they have also proved to be inconvenient. For example, whilst in the house on my own, I was unable to carry my lunch from the kitchen to the living room as I had no free hands to spare! It has also been found to be inconvenient when out shopping as I am left unable to pick items from the shelves or racks and therefore offers me less independent than using the one crutch as I am reliant on other people to do my shopping for me. In addition, because of the dizziness I have always found that holding onto someone for support, such as linking arms gives me comfort and confidence when out and about and so using two crutches also prevents me from having the support of another person.
So, I now have to make a decision to make whether to start using the wheelchair on a more permanent basis; although I do not always feel comfortable in using one because of the dizziness and vertigo, it has been put to me that because of the increasing severity of the trembling as I have stated above and the increased number of incidents of falls then it may be the time that I need to start thinking of using it for the majority of the time when I am outside of the house. This is not only to keep me safe from further injuries, but also prevents my falls from injuring others or even from falling and damaging items that are on display in the stores that I visit. It is not an easy to decision to make; for anyone it is difficult to admit weakness and further to admit that you need help. It’s difficult to accept that my legs are getting worse and further that I may need further support such as the wheelchair to be able to get around when out of the house.
Fatigue has also been a big problem for me also. As the pain and trembling have been bad during the nights, sleep as a result has been limited and thus leaving me exhausted through the day. Naps has been my best friend lately and have found myself falling asleep during the afternoons. These naps are more frequent and last longer after days where I am out and about I have also noticed. Fatigue not only leaves you feeling absolutely exhausted but also leaves you with little energy (or in our case ‘spoons’) to be able to do things that we would ordinarily do with ease. Completing one circuit of the gym has been extremely challenging, whereas before I could complete two with ease. Chores has left me unable to function for hours. Not only it has had an effect on my energy levels either. It has also had an effect on my mood – not only have I been snapping with very little provocation but I have also been feeling very low. I would not say it’s depression but am just generally low in mood.
In other news, I finally have had an appointment with the neurology consultant for early next month so I am hoping that all of the test results that I have had done over the past few months have found something, or there are ways in which they can help me and improve my overall quality of life. When things are bad such as what I am experiencing at the moment, it can often seem as if we are just existing rather than living; if we are just going through the motions or living on autopilot but I am determined to continue to fight my way through the bad patch and find my silver lining…
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