Having a chronic illness has meant I’ve learnt to get used to my own company. In the first year I had to get used to being bedbound rather quickly and once I got my wheelchair that opened up the world again for me. Only it didn’t really, it gave me mobility but with Andrew so busy and so reliant on him it meant I was housebound and if I was lucky on Mondays after work we could go food shopping, then on Sunday’s we could go and do things on his day off. Some evenings we started making plans, as and when we could but it was all hit and miss. A year later Andrew took me to visit Sportsable, which was brilliant, but on that one visit I managed to cause myself enough damage to my shoulder that I doubt I will play wheelchair basketball again, which saddens me greatly.
When I had my weekend melt down, during the discussions that followed we talked about what should happen next to make life better for both of us, to improve both our quality of life. This wasn’t just about the pressure of Andrew having to keep me “entertained” or cared for but it was about how I was feeling on a day to day basis. What’s it like for a 40 something woman who was previously employed in accounts, had a good job, nice friends as a couple, did voluntary work and a nice social circle as an individual to then become a recluse? I no longer had my job, all those so called friends had fallen by the wayside, the voluntary work had to stop as it was so physically demanding, as for the social circle of friends well let’s not go there, it would probably start an argument.
I had become dependent on social media Twitter, Facebook and Instagram, the friendships forged online had been amazing. I had even met some of these people in person and they were so supportive and have been incredible, just what you need when feeling so low but they aren’t on your doorstep! Then there are all the support groups for all the various conditions, the Ehlers-danlos syndrome, postural tachycardia syndrome, hypermobility syndrome, new persistent daily headache, chronic daily headache, there were loads of them and as more “conditions” became possible another group was joined. Suddenly my Facebook was awash with questions and pictures of people’s problems and it’s all becomes a downward spiral, in my opinion.
To the point where when you do hit rock bottom as I did that Saturday night, did I turn to any one of my “support” groups? No ….. I just allowed myself to spiral out of control, into complete misery, why could I not turn to these groups? What was holding me back? I ask these questions, as I did not have the answers …. So much so that I am trimming down my membership to these groups, I felt I couldn’t open up to these groups, therefore I obviously don’t trust these groups. I shouldn’t be in them, it’s time to leave, also the groups where I don’t have the condition as fully diagnosed I will be leaving immediately, I’m no longer second guessing the doctors. It’s time to stop worrying myself ahead of time, who knows what “might” happen, I just need to live in the here and now.
Secondly the plan is for me to socialize properly out and about a few hours a month, just leave the house, be it to Sportsable, or find some kind of club that I might like to join. To see real people, to speak to someone else apart from Andrew, to hold a conversation with an adult, it would be nice and I think it would help keep me sane.
Since that night we had a village event and I left the house for a few hours, I bumped into people I haven’t seen for ages and it was lovely. I went home with a warm fuzzy feeling inside, others won’t get it, but three things happened …. someone told me they liked my baking, I saw two friend’s new baby and some neighbours I haven’t spoken to in years. These are all normal things to most people but to me they were huge and I went home and cried because I felt part of something again, I haven’t felt part of anything for two years, it was a turning point a big turning point. Another one I’m ready to take, my life is full of changes at the moment, thank goodness I have a strong man holding my hand as I take these tentative steps towards getting my life into some kind of order.
Anyway if I can’t get out and about we will always be in a position to organize an evening or afternoon at ours, who’s up for it, the kettle is on or Andrew’s cooking 😜, who would like to come and keep me sane, keep me company and make me smile again? Xx