Migraine is not just a headache

migraineAutumn is usually my best months when I experience the least symptoms. Not this year. The two week migraine ended just before the weekend and I was left in that half zombie state called the postdrome phase. My sleep changed from 2 hours in 24 in 15 minute snatches to sleeping for 10 hours only woken up by external factors and sleeping through joint dislocations. I still couldn’t concentrate and I felt like I had the worst hangover in the world for days.

Last night, another migraine struck. I don’t know why, I don’t know what I did wrong, but there was no warning and no aura which is rare for me. I was fine one minute and in less than five minutes I was curled up in a ball holding my head, rocking back and forth and muttering silly things like “I can’t deal with this level of pain. I can’t do it. Make it stop, make it stop, I’ll do anything to make it stop.” Continue reading

Floundering

2014-08-27 11.32.31

The last week is a blur of incoherent moments that exist outside the restraint of time. I have slept roughly 14 hours in the last 160, so my FitBit tells me and the longest I have been asleep for is just under 2 hours; subsisting mostly on 15-25 minute naps with awake times in between mostly longer than the asleep times, even at night.

Why is sleep proving so evasive? Let’s recap. Continue reading

I have more than one story to tell

russian dollPeople with disabilities, particularly those with invisible disabilities face many challenges that can be hard to come to terms with. Often, it is up to us to come to a place of acceptance and understanding without much, if any support.

It is up to us to become experts in our condition, to struggle, usually for years if not decades, to gain access to the support we need that might allow us to become active members of society and it is up to us be our own advocates on top of all the other difficulties we already face. We might not even be sure that we want to claim the title ‘disabled’ for ourselves and accept the social stigma and negativity that often comes with it. Continue reading

If I loose my mind, I can always find it again

Dentist

I’m coming out of a 12 day continuous migraine and it feels as if the pain has been snacking on my brain for the duration. Yesterday, I was looking for something, I no longer recall what that was. “I can’t find it,” I mumbled to myself. “What have you lost, Mummy?”, Supergirl asked, magically appearing from nowhere. “My mind, hun, I think I may have lost my mind.” She looked thoughtful, but didn’t ask what I meant so I let the comment slide and we went to read a book.

Today, we went to the dentist. We talked about it loads before hand and I made sure she was comfortable and relaxed. I also made sure to tell her that I was indeed terrified of the dentist, but I was silly because we have the best dentist in the world who is a very nice man that just wants to help. She stopped me halfway from the car to the surgery. I pulled the wheelchair off to the side of the curb and she stood on the foot plate facing me. Continue reading

Am I just a woman with a disability who complains a lot?

2014-07-29 15.55.53I have done my utmost not to think about Wiltshire CCG, continuing health care, Personal Health Budgets or anything remotely related to it. It is stressful, exhausting and depressing as I realise every time how convoluted a simple 5 step process has become. Every time I do think about it, I wonder if it is my fault that it is taking so long. Did I say the wrong thing? Do the wrong thing? Ask for the wrong things? Offended somebody without meaning to?

Is it my overwhelming enthusiasm for the prospect of a Personal Health Budget that is applying just too much pressure on the people new to the whole process and unsure about how to implement it? I remember being asked in the meeting where I was offered a place on the pilot to please be understanding and patient as they have no idea what they are doing and it may take a little time, a few weeks possibly, to get the paperwork properly sorted out and the kinks ironed out. I said no problem. I had no intention of pressuring anyone. I hadn’t asked for this, I was just so grateful to have it offered that I didn’t mind if it took a while, months even to come through and I didn’t mind if a few flaws were evident, as long as we got to the right place in the end. Continue reading

Migraine aura symptoms are weird

Little Miss Hug drawn by my 3 year old to make me feel better
Little Miss Hug drawn by my 3 year old

I have chronic migraine that has never responded to treatment. I started getting migraines in early childhood, my first clear memory of a migraine attack is before I went to school and over time they have become more severe, chronic and stopped being ordinary. Attacks can last up to 2 weeks and can overlap with the postdrome phase bleeding into the aura of the next. I have a migraine more days than I do not and many are severe enough to be debilitating. Continue reading

Real life is everything else

Talking to the swans
Talking to the swans

I wake up in the morning and I feel as if not a single bone in my body is in the right place. Everything has shifted in a long night of frequent waking and lying awake waiting for sleep to come again. I try to move, but the mattress slopes to a single point in the middle and my right shoulder is wedged under my husband shoulder and I realise that his weight has pushed bones in my shoulder into weird and painful places. Continue reading