I haven’t blogged in a while. I’ve had so many thoughts and ideas jumbled up in my head, I’ve wanted to, but it’s been to difficult to put it on paper. I’ve been attempting to make some dramatic changes to my life. I realise now I took on too much, wanting to do more, be more, make use of myself. But it backfired, and all got too overwhelming. I sadly had to stop working for FibroAction, which is such a shame as I loved it, but it was beginning to feel such a chore, replying to emails late in the evening through blurred eyes, yawning and a complete lack of interest. It’s a bad time to leave the charity as they are going through an exciting time that I don’t really want to miss out on, but sadly it’s a sacrifice that had to be made. What’s lovely though is that I have made friends, especially the lovely Sian who runs the FibroFlutters blog and support group.
I have also taken up regular resting, planned days in bed after a long day, or two hour naps after work so I can function and hopefully spend some coherent time with my wife in the evening.
But trying to ease up on my workload hasn’t been all that easy. I recently had booked in to a business conference at the Bafta House in London, it was something essential for my business that I didn’t want to miss. Walking past The RItz and a number of shops that probably wouldn’t let me through the door was exciting, and the Bafta House itself was quite an amazing place. There were lots of speakers including Claudia Winkleman, Jack Monroe, Trish Halpin and other Marie Claire editors along with lots of people who have started their own business from scratch. I learnt so much and was having an amazing day. Until about 2pm. I hit my wall and needed urgently to get a break and sit down, or infact get home as soon as possible and lie down. But the conference didn’t finish till 5pm, and there was lots of standing around to contend with first. I cannot tell you how I got through the last few hours as I honestly don’t know. The train journey back to Brighton was one of the most uncomfortable painful journeys ever, and I spent the night on Tramadol hoping for some relief, and the following day in bed.
I celebrated my birthday last week and another action packed day was planned, shopping, lunch with friends, dinner, lots of fun and a movie with my wife. I woke at 8am and got home after 11pm. I felt fine until the final bus journey home as I was enjoying myself so much I refused to let fibro join in. But the next day was spent in bed and I struggled through the weekend that followed. Just sitting in the sandpit playing Cool Auntie Karen to my friend’s gorgeous little girl on the Saturday knocked me out for the rest of the weekend. But I had fun, and I have to make sacrifices in order to experience these things.
I recently saw a pain specialist after 3 years of waiting for a referral. He was amazing, so understanding, listened to me and knew what he was talking about. He’s writing to my GP to ensure I’m kept on the right medication (my GPs are generally quite useless and tell me off for taking pain relief) and referring me to a physiotherapist who can help with gentle stretching and getting my life back on track using pacing.
I have previously tried yoga, and loved it, as a form of relaxation and stretching, but it’s just too painful, my joints can’t take the pressure. And I’ve stopped using mindfulness and meditation too. I’m not sure why, I just can’t get into it any more. I used to find it so relaxing but now I find it stressful as I feel I have to force myself to relax which just increases my anxiety and pain.
Another move we’ve taken is getting a cleaner to come to the flat once every two weeks to give a thorough clean and change the sheets. This takes a lot of pressure off me as my role of a housewife, which is a role I gave myself and feel pressured to keep up, even though I’m not expected to.
So all of the above is a rather long ramble, probably doesn’t make any sense, and is just an outlet for the jumble of things in my head at the moment. But I feel better for getting it out there sometimes. And sometimes reading other peoples blogs and Instagram accounts makes me realise I am not alone. I have made a couple of lovely fibro friends recently and sharing things with them, and being there for them too, is a really wonderful thing.