The beginning of the Journey
Early into Susan’s symptoms when we had no idea what was wrong with her, this was a strange time for us realising our dream of a normal life after we were married may not be as we had planned. We had plans of going out most weekends to be doing genealogy as we had plans to make a major push on the Yorkshire OPC website, we were going to go around and photograph all the parish churches within the county of Yorkshire and to combine our joy of walking, but this was not to be. We also talked about starting a family and this also was something else we could not do as Susan’s Symptoms got steadily worse.
Trying to find some answers
We entered the merry go round of doctors visit and hospital appointments trying to find out what was wrong with Susan, the first consultant was very dismissive saying Susan had widespread tendonitis and gave her a bunch of exercises to do, Susan did these every day but there seemed no improvement, in fact, she was suffering more pain than before she had started. As she got worse she was prescribed painkillers to help with the pain these did help but Susan soon started to suffer from exhaustion and the everyday tasks became more difficult. Eventually, her doctor said that the legislation had been changed and she could now declare that Susan had Fibromyalgia which she had diagnosed without her needing any further visits to the specialists at the hospital to confirm this.
Changes to our daily life
As time went on Susan had to scale back nearly all social activities like singing in the choir at church and being part of the stage group at the church, we no longer were able to go on walks at the weekend as this was recuperation time for Susan. This also had an effect on my own health as I worried about Susan not being well. I slumped into a depression, Susan’s ill health was not the cause of my depression but it did contribute to it. Lucky I came out of the depression within a few months and now I am much healthier mentally.
Working and Sleeping
The things that have changed included Susan having to go on part time hours reducing from 37 to 30 hours per week. This improved Susan’s quality of life but this was short lived as her symptoms become worse and she again began to struggle with a work-life balance. She would come home and have to rest for at least an hour before she was in a fit state to do anything at home. While this was happening I took over all housework and cooking which before she was ill we shared equally. We also bought a new mattress from N:REM (You can read the post about that here), as Susan was having real trouble sleeping and was waking up a lot during the night with the old mattress. It was a year ago when we got the mattress and the difference it made to her sleep quality has been enormous.
Changes to our Entertainment
Since most social activities have been curtailed except a bi-monthly meal out with close friends we have had to look at entertainment at home, we both enjoy a good movie, we invested in a 4K Samsung 40 inch television as at the time we had a small 19 inch television as we did not spend a lot of time watching it, we both read a lot; we also spend a little time each month playing online games as an escape from the 4 walls of the house.
A Crafting Overhaul
Susan has made changed to the other love in her life, crafting. We purchase a die cutting machine called Gemini (you can see her post about this here) as this would allow her to continue to die cut card as she was unable to use the manual hand crank operated one she was using before her condition worsened. She also purchased a Stamping Platform as stamping images was becoming a problem as she could no longer apply the pressure needed to get an even image.
How we may holiday
We have had to make different choices now when we are considering holidays as a tent would not be suitable for Susan as her condition is now at the point where it would be impracticable. Also walking any distance tires Susan very quickly so we could never repeat our holiday to Cornwall or go to similar places.
The Journey from Fit to Fibro
All in all we have made changes as we have gone along the journey from Fit to Fibro, some are day to day changes as to how we live our life, others are more practical as in how can we have the best quality of life while Susan lives with this condition, moreover thinking about the future going forward, is Susan going to be able to sustain her employment as this is very important to her and the real possibility that we will not have children.See you again for more t’other half experience,