This was written by Michael in 2017, during the earlier years of my Fibromyalgia journey, and it reflects what life looked and felt like to us both at that time. If you haven’t already read Michael’s first post about our life before Fibromyalgia, you can start there before continuing with this part of our story.
The Beginning of the Journey
Early into Susan’s symptoms, when we had no idea what was wrong with her, it was a strange time for us. We began to realise that our dream of a normal life after we were married might not be quite as we had planned.
We had plans to go out most weekends doing genealogy, as we wanted to make a major push on the Yorkshire OPC website. We were going to travel around Yorkshire photographing parish churches, combining this with our love of walking, but this was not to be.
We had also talked about starting a family, and this was something else we could not do as Susan’s symptoms steadily got worse.
Trying to Find Some Answers
We entered the merry-go-round of doctors’ visits and hospital appointments, trying to find out what was wrong with Susan. The first consultant was very dismissive, saying that Susan had widespread tendonitis and giving her a series of exercises to do.
Susan did these every day, but there seemed to be 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 everyday tasks became more difficult.
Eventually, her doctor told us that she was able to diagnose Susan with Fibromyalgia without her needing any further visits to the specialists at the hospital to confirm it.
Changes to Our Daily Life
As time went on, Susan had to scale back nearly all of her social activities, including singing in the church choir and being part of the church stage group. We were no longer able to go on walks at the weekend, as this became recovery time for Susan.
This period also had an effect on my own health, as I worried about Susan not being well. I slipped into depression. Susan’s ill health was not the cause of my depression, but it did contribute to it. Fortunately, I came out of the depression within a few months and am now much healthier mentally.
Work, Rest and Sleep
One of the changes Susan made was reducing her working hours from 37 to 30 hours per week. This improved her quality of life for a while, but as her symptoms became worse, she again began to struggle with her work-life balance.
She would come home from work 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 of the housework and cooking, which we had shared equally before she became ill.
We also bought a new mattress from N:REM, as Susan was having real trouble sleeping and was waking up a lot during the night with our old mattress. We had bought it about a year before I wrote this post, and the difference it made to her sleep quality was enormous.
Changing How We Spent Our Time
With most of our social activities curtailed, apart from a meal out with close friends every couple of months, we had to find more ways to entertain ourselves at home.
We both enjoy a good movie, so we invested in a 40-inch 4K Samsung television. Before that, we had only had a small 19-inch television because we did not spend much time watching it.
We both read a lot, and we also spent a little time each month playing online games as an escape from the four walls of the house.
Adapting Susan’s Crafting
Susan also had to make changes to another love in her life: crafting.
We bought a Gemini die-cutting machine, as this allowed her to continue die cutting card when she was no longer able to use the manual hand-crank machine she had used before her condition worsened.
She also bought a stamping platform because stamping images was becoming difficult, as she could no longer apply the pressure needed to get an even image.
Rethinking Our Holidays
We had to make different choices when considering holidays. Camping in a tent was no longer suitable for Susan, as her condition had reached the point where it would have been impractical.
Walking any distance also tired Susan very quickly. At that point, it felt as though we would not be able to repeat the kind of holiday we had enjoyed in Cornwall, or visit similar places in the same way.
The Journey From Fit to Fibro
All in all, we made changes as we went along our journey from fit to Fibro. Some were day-to-day changes in how we lived our lives, while others were more practical and focused on how we could have the best quality of life possible with Susan living with this condition.
We were also thinking about the future. Would Susan be able to sustain her employment, which was very important to her? And we were facing the very real possibility that we might not have children.
See you again for more of t’other half’s experience.