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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,, I’m on YouTube haha

It is hard for me to write and there is only so much the microphone in my phone can do to change words to text and it makes lots of mistakes some of them are quite funny but it also doesn’t have any punctuation so it’s not the best way to write a blog so I’ve done a video instead hope you enjoy it P.S I’m not drunk or stoned promise PPS this was meant to be a practice run first take but I thought it was so funny I will share it anyway

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A lament

Here is a post I wrote back in June 2015 but didn’t feel able to publish – now I do. It’s strange reading it how relevant it still seems, though a little less raw now as I’m becoming more adjusted to this new ‘normal’

NB this is not a post for pity or sympathy, it’s simply a post to put in to words some of my complicated experiences of grief relating to having a significant and longterm (chronic) illness – I hope it will help build understanding and put things into words for others who experience similar things but are unable to articulate them at this point in time.

It’s generally accepted that grief – our natural response to the experience of loss – has 5 stages:

Denialnumb, acting as if everything is ok, in survival mode, isolation

Angeragainst other people, yourself, God, the situation in general, people responsible, the unfairness of it all – at the root of the anger/frustration is pain

BargainingAsking questions, trying to understand why, attempts to regain control, e.g. ‘if only…’ or ‘what if…’

Depressionsadness, regret, worry, guilt, wondering ‘What’s the point?’

Acceptancelearning how to be at peace with the situation, accepting reality for what it is, recognising what has actually happened and learning how to live with it

They say that grief is not a linear process – it’s not like you go from one stage to the other in a neat order and when you get to the end someone pats you on the back and says “Congratulations, you have successfully grieved, here’s a certificate”.

In reality people might go from one stage to another and back again many times over, in any order, or stay in one stage for a long time or even experience several at once.

Any kind of grief is incredibly complex and every person will experience it differently – there’s no ‘right’ or ‘wrong’ way to grieve.

The stages aren’t meant as milestones you have to pass in order to get to the next level, they’re there to reassure people who are dealing with any kind of loss that the thoughts and feelings they’re experiencing are completely normal.

Having said that, I’m starting to wonder if grief associated with chronic (longterm) illness might have its own ‘normal’, partly because there are so many layers to the loss – every single part of your life has been ripped apart by your illness – and partly because it’s ongoing, so there’s no point of closure.

Some of the things affected by my experience of chronic (continuous and longterm) migraine include:

Lifestyle – my condition has significantly affected my job, my social life, my hobbies, my leisure activities, my finances, my holidays, my experiences of community and connection and what I’m able to do on a day-to-day basis.

Relationships – through nobody’s fault, my relationships with people have naturally changed since the unwelcome visitor of chronic illness was thrown into the mix, from being limited to when and how I do things to the awkwardness that it brings when neither of us knows what to say or do any more. And the guilt, however much people tell me not to, the guilt that other people are having to look after me, the guilt that other people are doing the things that I am meant to be doing and want to be doing, the guilt when I have to change plans, the guilt that I can’t be the wife, friend, daughter, colleague, that I want to be.

Identity – my experiences have shaken my identity to the core, challenging every aspect of who and what I am and why I’m here. They’ve made me ask questions I never wanted to ask and didn’t like the answers to, mainly because there are no answers. I’ve lost all my foundations and assumptions about life, myself and everything – I deeply miss the relative simplicity and certainty I used to have.

I’ve lost freedom, independence and opportunity,I’ve lost choice and control, I’ve lost all sense of safety and security, I’ve lost my identity and my purpose.

All of these things represent a loss, so I’m grieving for each of them in some way or another – usually in some crazy, confused and jumbled up way that makes sense to no one, least of all me!

On top of all of that I’m having to let go of my hopes and dreams for the future and grieve each one in turn. I’m even grieving for the innocence with which I dreamed those dreams and just assumed that life would turn out ok.

I’m also grieving the times when I could take my health for granted, when I never even realised what a wonderful gift it was – before the intense vulnerability that comes from knowing that I can no longer trust in my body and brain to do the things they’re meant to do – they’ve failed me and even if they get fixed this time around, that basic trust I once had has gone.

I’m grieving because now I know that my body is weak, my brain is faulty and because I’ve seen where my mind can take me on bad days.

I’m grieving for all the days I’ve lost so far, for birthdays, weddings, meals, dinner parties, gatherings, lunches, coffees and all the passing conversations that I’ve missed and for the loneliness that comes from being ill.

And I’m grieving for the days that stretch ahead, all the days to come that will continue to be an uphill struggle because that’s just the nature of the beast.

I’m grieving for all the time and energy spent on fighting battles no-one will ever see, and for all the things I wish I could have been doing instead.

I’m grieving the fact that I’m not one of the fortunate few who discovers their miracle cure, all the prayers for healing have not been answered, there’s no fairytale happy ending, just the dawning realisation that we’re in it for the long haul.

And I’m grieving for all the time I lost while holding on and longing so desperately for the life I wished I had, which meant that I couldn’t live the life I actually had.

I’m also mourning the realisation that there’s no going back – even if I was totally cured tomorrow I couldn’t go back to where I was because the world and it’s people have moved on since I’ve been gone. And even if they hadn’t, my experiences have rocked me so completely that I’m now a fundamentally different person.

I’m faced with the task of carving out a new place in a world that is both familiar and alien, with a body and brain that don’t work properly any more, in circumstances that I don’t want but can’t change, and I have to somehow wade through all these layers to come to some kind of place where I can move on.

But the grief will still be there as a companion on the journey. It never fully goes away, you just get more used to dealing with it and the pain begins to hurt less often. Grief has no time-limits and no ‘right’ or ‘wrong’ ways of working through it – grief will do what grief will do.

Given how many things are lost when longterm invisible illness takes hold, I think grief is probably quite an appropriate response. Maybe I shouldn’t be surprised when I feel a bit overwhelmed sometimes.

Everything has changed, but all is not lost.

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