There’s usually a good reason why when there are long gaps between posts; severe symptoms during early pregnancy was one, having a really good spell and being out and about rather than indoors writing is another and getting bored with writing about my life is the last.

It can all be very depressing and overwhelming. The care situation is a black hole that sucks the life out of everyone in a two mile radius; it just never ends; evaluations, assessments, reassessments; stalling, more evaluations, paperwork, paperwork and a request for more paperwork. If the government handed me a tenth of the money that’s been  spent on trying to assess what assistance I’m entitled to, I’d have been able to buy state of the art equipment and contract an agency to provide flexible as-needed support getting on to two years ago now. Thinking about it, I probably could’ve bought a house with the money wasted on administration, assessments, reviews and the mountain of time wasted by inefficiency, redundancy proven by the fact that its taken months of assessments to determine that I’m not entitled to an adapted cup; I should be able to manage just fine with a particular style of standard cup, just the one type mind, and as its not adapted but of a standard design, it’s not an allowable expense. I have no quibble with buying my own cup, its the fact that the process of determining whether I should get one or not cost more than probably a life time supply of cups erks me.

Ninety percent of time is spent on determining what impact my condition has on my ability to function and what support that amounts to. For care, the same review process, as its multiple assessments carried out by various professionals, have determined that I need anything from no care to 24-hour all year round. I’ve been called resistant to treatment, one report suggested that I need a psych assessment, one suggested my pain relief should be ibuprofen only (the fact that I have a sensitivity to Ibuprofen due to brittle asthma didn’t seem to make it across despite this being pointed out on more than one occassion) whilst on the other spectrum Etonox at home was suggested. I want neither. I want my standard pain relief that I’ve always had that works well for me. I don’t want 24-hour care, but also can’t cope without support with a husband with a chronic health condition and an 8-month old bendy baby at home.

I’m very fortunate to have a solid medical team, I know that most people with chronic conditions, especially the rare ones, struggle getting even that sorted out. My consultant promised to call whoever needs calling and setting straight, explaining that I need some support, that I have a legitimate genetic condition with legitimate, real symptoms and limitations and that finding the middle ground would be very helpful. I’ve made a formal complaint about a particularly damaging and eroneous report and the equipment mess that just drags on forever, which has been acknowledged and handed over to someone that’s on holiday until the second week in August. Frustrating, but understandable.

Dealing with a serious medical condition is hard enough. Trying to get yourself to the highest level of functioning possible is hard work and really stressful. Being judged, assessed and constantly evaluated and when something within a variable condition varies, (I saw her walk, really I did and get up off the floor unassisted, she must be fine, it’s all in her head) accused of having faked disability, isn’t helping. My condition provides enough challenges and setbacks without the addition of a permanent ball and chain.

Buttons subluxed her shoulder a few days ago. As a result, picking up her cup to drink her milk is uncomfortable. We watched her yesterday, encouraged her through tears streaming down her face to pick it up anyway and she did, for a little while. She held it for a few sips, then her arm got tired and she needed a little help with the weight, but she still held on to it and directed and then it got worse and she let go. If she didn’t get any help, she would have been able to have a sixth of the fluid intake that she should have and as a result, other things would have started to go wrong; dehydration being the obvious one. If we just held the cup for her, she would never be able to hold her own cup and drink independently. How much she can do varies based on her shoulder; some days she can’t hold the cup at all and other days she can drink from start to finish independently. Parts of it is psychological; she needs lots of encouragement to always push to that level of pain where it hurts but I can put up with it; learn not shut it down and ignore the pain entirely as that leads to damage, learn not to stop when it hurts as her abilities will just slowly decrease over time unless she works hard at maintaining and expanding her stamina. That’s life with EDS; some days you can’t do it, some days you can and the vast majority of time you fall within the 10-90% range.

Providing the right level of support is impossible to predict and I often get it wrong; it’s difficult to tell where your limits are when they are constantly shifting and its even harder to keep your emotions out of it. Sometimes I push too hard, do too much and cause a significant setback; other times I get comfortable and complacent and stop moving as fast as I potentially could go on that road to “better”. When multiple people that don’t know you, know very little about your condition and that refuse to take the fact that you have a family into account also decide to try and weigh in on where your level of functioning should be, not on a day to day basis but on a the day I’m here is the view I’m taking; life gets very stressful. It’s a pity that so much time and money is going into trying to do just that; more money, much more taxpayers money has been spent on determining what I should get than spent on providing any type of support and that imbalance will just increase I suspect as my complaint finally makes it onto somebody’s desk.

I’m tired of getting undressed in front of people, tired of being told what I should and should not be able to do, theoretically of course, tired of everything taking month, of all the negativity, the frustration, the lack of any empathy or support and being treated like I’m the bad guy, I’m the instigator and trouble maker because of my refusal to have be single and elderly and have a common condition that is listed on their tick box systems.

Today, I bought my own mug. It is not of the appropriate design. I guess that makes me a rebel. I can think of a lot worse labels that could be and would be thrown at me when the peanut gallery learns I opted for a mug that I thought appropriate due to its size and design. At minimum, I would at least like to reserve the option to try it out and see if its okay on my wrists, because its the one out of dozens that stood out and said buy me, I’m red and snazzy, yet small, comforting and affordable with free next day delivery. Buy me. So I did. Because I can. And now there’s only one left in stock, so if you want a red and snazzy and dependable espresso mug (not that I drink espresso, just regular coffee in small doses), quick, grab it now.

If you’re reading this months from today, more in stock soon, so hopefully, it’s still there for the envious. Some like their red Dorothy shoes, others, me hopefully, their fire engine red espresso mug, but I think the gist of it is similar. There comes a time when you have to be stubborn and willfull and put your foot down. Some times its saying I’ll give it a go even though it hurts because its good for me in the long run, other times it’s saying, no, that’s too far beyond me, I’ll pass and other times it’s just saying you can try and make me fit into tick boxes system after system, but at the end of the day, I’m a real person, with a real life, a real family and if you can’t understand or accept that, well, label me whatever or however you like, it won’t make me any less of who I am. I’m done getting caught up, done trying to be as cooperative and nice and accommodating as I can be. I’m now going to live my life and I’ll accept, hopefully graciously whatever appropriate help is available and if that makes me difficult, well, I guess I’m just difficult on top of “complex”. The negativity has got to stop somewhere and here and now is as good a place as any.

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