Posted in Blog Posts

A Yorkshire Break

My husband and I are just home from a week in Yorkshire with our daughter and our dogs. It was wonderful. We were very lucky with the weather, our accommodation — a converted cowshed dating back to 1653 — was just lovely, and our trip there and back was uneventful: the best kind of journey to have. But it was also a sad trip for me in many ways.

We had arranged for a decorator to paint the entire house while we were away. It was all organised at the last minute so the days before we left were filled with tidying, cleaning, and moving *stuff* to storage instead of packing and looking forward to the trip. I was completely exhausted and in huge amounts of pain before I even began to think about actually doing anything in Yorkshire.

In the past, I would tell my friends who lived nearby my holiday destination when I’d be visiting and hope to see some of them while I was in the area. This time, I kept my trip to myself. My illness seems to have worsened exponentially over the past couple of years. I can no longer make plans with any confidence that I’ll be able to follow through with them. I really had to push myself to get in the car last week and I was done before I really started.

A couple of days in we needed to pick up a few groceries at the supermarket. We drove to Ripon and I went into Sainsbury’s with my daughter while my husband entertained the dogs outside. I didn’t go around the whole supermarket. We had a list and only went to the aisles where the items we needed were. We hadn’t picked up our second item before the pain in my hip and my back, and the exhaustion from this paltry effort, meant I had to let my daughter scoot round while I slowly hirpled out the store.

And that was me. For the rest of the week. I encouraged my family to go out and about, to visit places, go for coffee, and walk the dogs while I stayed in and rested.

I had only recently come to terms with the fact that the old Nettie was dead, along with all her hopes and dreams. I found it freeing. I no longer felt under any pressure to achieve the things that healthy people did and I found new, smaller dreams. Now, it seems that I have to let go of Nettie 2.0 and see what this next iteration is capable of. I am so very sad about that, and just a little bit angry.

But I’ll cope because I always do, eventually.

Incidentally, the house looks lovely and colourful and once the new carpets are fitted at the end of next week and we get all our *stuff* back from storage, I can relax. I hope.

Posted in Poetry

Don’t Talk to me About Life

I look back with nostalgia
To when fibromyalgia
Was merely a good score in Scrabble
When getting up from my chair
Did not make me swear
And I could keep docs away with an apple. 

When at night I could sleep
Pain would not make me weep
And I could stand for a while without crying
When I still had the power
Each day to shower
And not feel as if I were dying 

But times they have changed
And it still feels quite strange
To use a stout stick when I walk
To now not be able
To sit long at a table
Or call up a friend for a talk. 

My life’s getting smaller
You don’t need a scholar
To tell you I’m fed up and weary
It hurts to get crafty
And I feel like a daftie
When life gets me sad and get teary. 

I know things could be worse
But life feels like a curse
Like I did something bad in lives previous
I’ve racked up some bad karma
When I cursed out Big Pharma
And now taking my meds is quite tedious. 

The future seems dark
There is no vital spark
To let me see naught but more pain.
So, I’ll get up tomorrow
Try to tamp down my sorrow
And do it all over again 

and again and again and again…

Posted in Blog Posts, fibro

(Dis)Ableism

Most of you will know I have fibromyalgia/cfs. I also have osteoarthritis, IBS, loads of allergies, chronic widespread tendonitis, bursitis… I’m in pain somewhere every day. I’m not fishing for sympathy, it’s just the way it is. 

I recently underwent a reassessment for my entitlement to PIP and this time they accepted how difficult I find…everything, but especially standing and walking. I can’t stand for more than twenty seconds without my back screaming at me and my hips make walking very difficult. And when my arms/shoulder/hands are flaring, which is often, using my walking stick or walker causes more problems than they solve. 

Continue reading “(Dis)Ableism”