Some things are too big to be seen

beach

Supergirl has whooping cough. Thank goodness she had her immunisations because if this is the milder version, I don’t want to know what it would’ve looked like in full force. It’s coming up to two months and like these things happen, we didn’t think much of it until the distinctive cough arrived. We recorded it, played it to her paediatrician who made the diagnosis.

She was very nice about it, asked very gently whether we knew that sometimes its called the 100 day cough and that there’s a while to go before she will get better. I sat with a huge grin on my face. She’s going to get better, it’ll clear up and go away, that’s awesome. I can 100 days, no problem, just as long as it goes away. Continue reading

Be kind, be polite, be helpful

Toddler balancing on a wooden beamThe life of an almost four year old is more complex than I ever imagined. It is a fine balancing act. My daughter is old enough now to tell me with great detail about her day at her preschool. For the most part, all goes well. She makes friends easily, she is confident in both her abilities and herself and she does not succumb to pressure, either internal or external.

Fatigue is her biggest obstacle. She tires easily and some days she’s just listless and does not feel like either interacting or doing much of anything. She has a card at nursery that she made herself with help from the SENCO (special education needs coordinator) which she can hand to any of the adults when she gets too tired and needs a rest. Continue reading

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

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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