Resilience tune #15

I’m jumping back on the blog with another of my resilience tunes, this came on today and I couldn’t not!

I have such great memories of driving down Morecambe Prom with my friend Kerrie in my battered old Micra after a break up, windows down and this so loud on the stereo the sound was distorting, but it didn’t matter cos we knew all the words anyway.

Here you go…

Destiny’s Child – Survivor

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Watch “A (relatively) good day” on YouTube

Video is easier than writing these days so here is my latest YouTube video with added chicken sound effects

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Watch “My day #migraineawareness #hemiplegicmigraine #brokenbrain” on YouTube

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Diagnosis X

It’s taken many years but we seem to be getting closer to a diagnosis that makes sense of all the weird and wonderful symptoms that have come to visit and decided to stay.

Its been so frustrating being sent from person to person, no one really having a clue what’s going on but choosing to dismiss it rather than say ‘I don’t know’.

I don’t fit neatly into a box and that hasn’t been very popular with some of the neurologists with less-than-excellent people skills.

In the last year I have been fortunate to meet a wonderful headache/migraine specialist nurse, a very knowledgeable and experienced man who is also personable and kind. I have a stable GP who ‘gets it’ after a long string of excellent but temporary GPs. And just in the last few weeks I have seen a new specialist neurologist who explained things really clearly and was able to offer lots of new treatment options – she was the most helpful consultant we have seen by a long stretch.

These 3 people have made a massive difference and we are now much closer to understanding what is going on.

On top of the chronic migraine diagnosis it seems that I am also experiencing hemiplegic migraine attacks approx. 3-7 times a week, each one can last up to 72 hours so I’m never free of one before the next one starts.

Not much is known about hemiplegic migraine or the long term effects of repeated attacks but here is some info for those who are interested:

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Community care

Today I saw the most lovely lady, she is a community care co-ordinator. She was great and we have lots of avenues of support to look into. This is good news. My last neurologist told me ‘there is no support, the NHS is crumbling before our eyes’. Fortunately we now have a new neurologist who has a bit more optimistic outlook (and plenty more treatments to try that we hadn’t even heard of, hooray. The last neurologist seemed to think we were all out of options, bah humbug)

So I now need to get my head around being referred to adult social care and occupational therapy and look into different types of adaptations and equipment, which would be easier if the leaflets didn’t look like this…

Or this…

I know people call me dementia granny but I’m not quite sure how I feel about having grab rails and equipment all over the house yet. I’m very grateful but it’s hard to get my head around it at the same time. Good to know there are options though and hooray for this lovely care co-ordinator and a good visit today. Thanks to everyone who sent prayers and good wishes for it. Also thank you to the St Thomas’ people who have offered so much support, especially our life group, she couldn’t believe how supportive people have been and loved hearing about people’s generosity and kindness. Thank you for the people who cook and do laundry, who wash up and do gardening, who hoover and clean, who run errands and do shopping. It makes a massive difference. Thank you x

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Feeling proud

Thanks everyone for your support following my last post. I managed to sleep in the end, I’ve facetimed some of my favourite little people, I’ve cuddled a teddy bear in an embarrassing regression to toddler-hood, I managed to get down the garden to see the hens, I managed to eat and drink and take all my meds and treatments and I managed to have a bath ALL BY MYSELF! The last week I’ve needed help everyday to get undressed, help to get into the shower, help to turn it on, help to reach my things, help to get out and help to get dressed. Today I managed everything, even climbing in and out of the bath, all on my own, just with someone on call in case I had an attack. Also I’ve only needed to use sticks a couple of times today, just for the stairs. Feeling so proud to have dragged myself out of the migraine pit (even though most of it is out of my control, I’ll take it anyway!) and pleased to be feeling more me. I’m in the middle of some medication changes at the moment and it’s having all sorts of effects, bad attacks, sleep problems and mood swings are the most interesting (lucky husband!). Glad I remembered this, gives a better perspective on things. Seeing the community nurse in the morning to see what equipment and support is available, prayers, blessings, good wishes and whatever else is your thing very much appreciated! Thanks most excellent people of the Internet, sending you love peace and joy x

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Bad day rant

Today is a struggling day, I’m lonely but too ill to see or talk to people, I’m bored but even the simplest things I try to do are defeating me, I want and need to sleep but I can’t. I’m fed up of being cooped up in the house all the time, being trapped in a broken body with a broken brain. I want to be having adventures, to be working, to be able to have a shower without help. Most days are better than this, but when they come they are long and difficult. The loss and the grief of the life I should/could/want to be living weighs so heavy I feel like it’s crushing me. Bored, tired, lonely, grieving, fed up and unable to move without great amounts of pain. Usually I am more positive but not today. This is my day today and I am hating it.

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