We have received a letter address to Mr C Ellis by recorded delivery early on Saturday morning, 48 hours ago. I stopped eating, stopped sleeping and started worrying.
I handled it better than I have done until now. Usually after a letter from Wiltshire CCG, I burst into tears, have a total meltdown, cry for an hour and wonder if killing myself might be the solution to this problem. (Don’t worry, I have an amazing husband at home who has lived with my mental health issues for quite some time and we have decent strategies in place to make sure I don’t actually act on how I feel until I feel differently). Continue reading
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
The 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
Autumn 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
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
People 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