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.
‘We are all broken. We will all need fixing’. This line sums life up so well. A lovely read x
“If it ain’t broke, don’t fix it.”
I’ve been thinking about this phrase for the past few hours and how it might apply to us as human beings.
No-one is perfect. No-one is immune to the bullets of life’s loaded gun. Yet how do we know when something is sufficiently damaged to require fixing? And once fixed, how do we define the boundaries between healthy and unwell? Is there such a crude division of wellbeing?
The most important lesson to remember when discussing mental health and wellbeing is this: life is a continuum. There are highs, and there are lows. What works at one point in our lives may fade and falter in the next. Rather than seeing such setbacks as permanent failure, we must build upon these experiences and piece back together these broken fragments of change.
This leads me onto my next point: can we ever truly be mended?…
View original post 206 more words
This brilliant piece explains so well what I need to say too, to my friends, my family and those who just don’t understand. Thank you Anne for writing it xx
To my friends and family, please read xx
Before I start, this post may be controversial and for a number of people, left housebound and bed bound by fibromyalgia, I know that work isn’t possible at all. I am not trivialising and I am not trying to argue that anyone should force themselves to do more than they are able. I’m not accusing people of being lazy, and I’m not trying to say that I think everyone with fibro should be at work.
That said, I’ll begin….The reason for this post is two-fold, one to try and explain to people without fibro why those with the condition may struggle at work, and why many will revert to part time working and ultimately stop. It’s also to try and say to people that do have fibro, that it doesn’t have to be the end of a career. It might not be easy, but if you want to do…
View original post 1,082 more words
It’s the first of the month so let’s have a poll to see how differing aspects of fibro affects us all differently as we all know that just because we share the same symptoms and anxieties we are not the same!
How do you expect the results to look?
I had another appointment with my new doctor today. We’re getting on really well now. Openness does you a favour most of the time in my experience. Anyway, Id booked it just to ask for a repeat prescription (because it’s the first time I’ve had to request these things since we’ve changed practice I had to go in for an appointment), but that’s not what we talked about.
Instead, we carried on from the last time and I wanted to share something with you. This is a diagram that we’ve been using to look at coping in fibromyalgia. Please excuse the picture, it’s harder to draw on an iPad than you’d think!
So, the y axis is the ability to cope, or the amount you can cope with. What it’s trying to show is that whatever the scale on the y axis, you can only handle so much before you…
View original post 361 more words