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.

On a day to day basis I do not think of myself as having a disability. I have EDS, I have chronic intractable seizures, I have brittle asthma and a few other things, but I do not wake up thinking of myself as a patient either. I wake up tired and in pain, feeling like a truck just run me over, but I have always woken up feeling terrible so that isn’t even my first conscious thought of the day because it is just another ordinary day for me.

I wake up and I also feel just like every other person who is not a morning person. I stumble out of bed (with or without help, with or without falling over and lying on the floor for a while before getting up and carrying on) and after ‘morning’, the next word out of my mouth is ‘coffee’.

Some of the thoughts in my head is as trivial as those everybody else have. I think about the itinerary of the day and the week, I am surrounded by the chaos of a house with a 3 year old and two cats living in it and I sit in the lounge and drink coffee and check the day’s news on-line before I do some yoga, spend some time on the exercise bike and then get dressed.

I think about work, about getting my daughter to nursery, about plans we have with family over the weekend and I have conversations throughout the day with friends online.

clocks

I read a lot, both on-line and on my ereader (currently trying out Paladin of Souls by Lois McMaster Bujold) and listen to audio books. I enjoy going to the cinema (at the moment the most said sentence in the house is I am groot!, even by my 3 year old who no idea of the context).

I love long isolated walks in the rain. I am Sylvia Plath admirer and the most proud owner of a physical copy of her children stories’ book. I love swimming and video games and I  am again trying to make time to play them more often.

I love travelling despite it being very challenging and I think using loose parts for play is awesome. I am first and foremost, just a person like every one else. I would like my life to be about these things, above everything else.

The challenges, the barriers, the at times impossibility of accomplishing the above is like a layer added over the top and at time, it is suffocating, but it should not be what defines me and it most definitely should not be the things on my mind all the time.

BarrierTree

We have made progress over the last decade in facing these barriers with determination, courage, persistence and an optimism that occasionally wavers but always returns. I will not be someone defined by what I cannot do. I have learned life skills, coping strategies, ways of living and we are actively working very hard towards changing the immediate environment around me to be enabling and not disabling.

Life is a fine juggling act and there is always the risk that these things that I strive to overcome swallow up my all of my life. Keeping it in check, overcoming what I can is tricky. My 24 hours are filled with activities I cannot accomplish without help. Each activity, including the simple things like getting up after sitting down, comes with a list of complications that vary constantly and the impact is so complicated that a lot of my time is spent trying to come up with innovative, affordable and hopefully permanent ways to overcome them.

I don’t want be just a person with a disability. In an ideal world, I don’t want to be a person with a disability at all. I want to be equal to everyone else despite being a little different. I want to go about my day like everyone else do, without constantly worrying about whether I will be able to and desperately trying to plan ahead to make every little activity in my life possible.

The world is quickly becoming a more accessible place and thanks to affordable technology, there is much I can do to make my life more about the things that I can do. I am excited about what the future holds for people like me and I am hopeful for a future for my daughter where she will not be marginalized into the fringes. I want her to have a career, a family, a social life, friends, success, happiness, a good education and I want her to be able to choose what she wants to do with her life without the limitations that inadequate support, a poorly designed environment and social attitudes with the arbitrary restrictions impose.

I don’t want life to be easy, it is hard and it should be hard. I just want it to be a little bit easier so that more things that are now impossible become possible. I want to focus in my life to be on what I can do, on solutions and positive endeavours. Life is so short, the time we have to spend with loved ones so precious, I don’t want to waste a second of it. I have more than one story to tell and the others are so much better.

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

I hate having to reschedule

scheduleI have OCD and Chris has Asperger Syndrome. We thrive on schedules and predictability. Knowing what is going to happen and when makes life a lot easier. One of the hardest implications of having variable conditions is that our health has a tendency to mess up my schedule without warning and often at the last minute. I hate cancelling anything. I hated calling in sick at work. I hate having to adjust my plans at the last minute because I am suddenly no longer capable of carrying out the plans we have made.

Today was suppose to be a day for family. We had planned to stop in at relatives in the morning and then go on to meet up with other family for lunch. We had arranged to take a picnic for lunch and have scheduled support staff to be in later in the day so that we had help when we got back tired. It hasn’t worked out that way. Continue reading

Wiltshire CCG is not following best practice guidelines, but what can I do about that?

phb nhsMy Personal Health Budget has gotten very complicated and confusing. We are in the process of compiling paperwork for a formal complaint to submit to the Ombudsman and there are hundreds of pages of e-mails and supporting documentation to print out, organize and file. Just my support plan is almost 30 pages, having grown from 2 sheets of A4. The attached budget grew from half a page to multiple confusing pages riddled with duplications after being amended at Wiltshire CCG’s request by Compass.

We have spoken to a lawyer who has given us some pointers on how to put our case together for the Ombudsman and I cried looking over the paperwork. I think I should be angry, but I am not. I am just stressed out of my mind, sad and frustrated. Sifting through all of it has been very stressful and I am saddened by the fact that what could have been a simple, positive experience by everyone involved has turned into an going nightmare now ticking over into more than a year with still no real end in sight.Every time we complete the step outlined, another step is added on before my support plan can be signed off.

Instructions go back and forth, paperwork is lost for weeks on end multiple times, money is paid into the wrong account when it finally is paid (not that I am able to use it for much), what is said in meetings is denied in writing after the fact, the support plan is signed off by the local community matron and within a week after she resigns, the document it is flagged for review and the process is halted for 3 months to the earliest meeting date Wiltshire CCG’s CHC team could attend. Every time I have arranged for an advocate to be present, meetings are rescheduled or appointments not kept and nobody shows up. Continue reading