My Days………..

I've never found it easy talking about my challenges, or days, with Fibromyalgia, IBS and the effect that grief has also had on my life and symptoms.  The one thing I would like to say is that Fibromyalgia is so different for everyone, in symptoms and our handling of it. No one size fits all with this one!

when I was first diagnosed twenty six years ago, I would collapse with exhaustion, or pain; I could go the whole night without sleeping; I constantly had flu like symptoms; I walked in slow motion and it felt like someone was prodding me with hot spikes; I struggled to get dressed and often slept in what I'd been wearing because I couldn't reach to take it off, or I hadn't got the energy; friends, family and my doctor actually listened; my body would itch for no reason; I managed to catch one virus after another; I fought against it and tried to carry on as if I was ok. And my IBS did not like fibro, or was it the other way around?

Have things changed and how?

I’m amazed that I actually slept for over four hours last night- it’s very unusual and I’m very, very grateful.  It’s the most used word in my day - grateful - for so many things. 

At the moment, I have family staying with me, but they’ll be leaving today.  I live alone and have been so looking forward to seeing them and to have human conversation and company. I go weeks without actually speaking to anyone face to face and if I feel the need to speak, I ring a friend. But all my friends and family live away.  Family are far too busy in their lives and I don’t bother them, but they seem to ignore my health problems and I do feel sad about that. I feel invisible!

It’s been a tradition for many years to have a Chinese takeaway when we all get together, but Chinese food, though I love it, does not love me!  I had a very small amount and enjoyed it, and the evening with my family. Yesterday, they wanted to have a barbecue by the sea - still not the best for my tummy, but I wanted to enjoy time with them and I didn’t want them to think I was being awkward. I think that’s how they view my illness.  Anyway, They went off with the dog for a morning out and I went to the shop for burgers, etc, to prepare for a barbecue by the sea. It took me a couple of trips, but the shop is only five minutes away, so not too bad. I felt lucky and happy.  They arrived back from their outing and I prepared lunch, having very little myself as I didn’t want to upset my tummy. Mid afternoon, my IBS started, and I ended up in the bathroom,  I was hopeful that it would settle before leaving for the pier and buttered rolls, and packed the food up ready to go. As we grabbed our coats ready to leave, my tummy started and I needed to dash to the bathroom. Still hopeful, I returned down stairs ready to go, but had to ask them to leave without me and I would follow on when I could, which they did.  Unfortunately, my dashes lasted for hours, the pain and discomfort began and I was feeling very nauseous. And disappointed too! I rarely have someone else in the house and was so looking forward to it, then this! Was it the Chinese? Was it the excitement of spending time with family? My head was berating me for eating the Chinese and I’ll not be eating it again whatever assumptions people might make.  I felt alone, ill, and quite sad.  Yes, it has happened many times - both fibro and IBS are so unpredictable, but it’ll be some time before I see family again. Or anyone in my house again!  I felt very alone and not one message to say “how are you feeling mum?”  

When the family arrived back from their beachside barbecue, there was no mention of it then either and I realised that I wasn’t missed. Yes, I still feel hurt, but I am a sensitive person. I’ve always supported my children, whatever their problems, or ambitions.  Have I loved them too much? Can you love someone too much? They seem to have little respect for me and I guess that’s my own fault. 

When I retired to my bedroom, I was a little worried that my tummy would have me up and down all night, but I was relieved when I awoke in the early hours and soon went back to sleep. I still feel yucky, achey and uncomfortable, but I’m still here ♥️

My visitors have arranged to go to one of my favourite places this morning, but have decided they would like to walk there and have breakfast.  They haven’t invited me of course, and I wouldn’t be able to manage it, but I’m not well enough to go and will miss precious time with them.  They’ll be back for lunch and then heading back home. I’ll not see them again until August. I miss smiles, hugs, conversations, laughter, love ……….

However, I’m also very lucky, because I love nature and it’s been my ‘go to’ place since I was a child. It’s my therapy. It’s been kind to me and I do my best to be kind to it.  Meditation too! I practice twice daily, mostly on Insight Timer - an amazing app. if you’ve never tried it, please do.

I’m writing this from my bed, but feel I must get dressed now before my visitors get up.  Decisions don’t come easy to me, especially at this time in the morning, so I’ll probably choose something easy to wear, but change it later for something else. I’m never happy with me! Is that another fibro symptom? 

To end this page, I have to say that age hasn’t really made a difference to the fibro, but I think other life events have, and I can still walk some days and work in the garden some days. I still need comfortable clothing because my skin is sore to touch! I still eat carefully, but I eat!  I still enjoy music and dance around the house.  I still enjoy looking after wildlife. 

I still love life and feel blessed.

I wanted to write this this morning (it’s taken me over an hour) and say try not to worry about how you will be in the future, but concentrate on the moment. My meditation and my garden help me to do that.

I hope you all have a pain free and happy day.

Love and blessings.

Tina