We were extraordinarily lucky to get onto the pilot program for Personal Health Budgets in Wiltshire. We were told that I was a prime candidate for it, that the guys at CHC thought it would suit me best and to keep in mind that Wiltshire was quite a bit behind the rest of the country and we were one of the first few to start down this bumpy and to them unknown road.
I was ecstatic about the prospect and understanding about possible complications during the process. I was not prepared to be met with vague replies that left me completely unsure as to where exactly in the process we were.
I was told at the last meeting, now just over three weeks ago, that as we had already written up the paperwork, that it was exactly the type of aims that they were looking for and all of it falls complete within the guidelines and we were happy to email it through the same day in the correct format, that the process should at most take 2 weeks to set the indicative budget and support plan, run that by us and then pass on the final budget to our chosen third party, Compass.
The process, outlined by CHC in writing to us, is this:
Just to confirm the steps for the PHB process
· A letter is sent to the patient outlining their PHB budget
· Submission of the health outcomes plan, with risk assessment and care plan for the CCG to agree.
· Compass notified of patient and requirement to support with PHB
· Compass work with patient to agree plan for how health outcomes will be met and therefore how budget will be allocated for the various outcomes identified
· Patient signs legal agreement and PHB starts
* Side -note. Although the official national paperwork state that patients choose the third party responsible and we were initially told that we could pick anyone, in Wiltshire, “Compass apparently are the only Brokerage service that have had the full discussions with Wilts re starting the process for Wiltshire PHB users. … whilst the intention is that individuals will be able to choose who they go with, from April 2014, Wilts have not facilitated the conversations with others yet and therefore are not in a position to be able to support other providers till that has happened.”
Last Monday, two weeks after the meeting, not having heard anything from anyone, Chris sent a short email to enquire on the status on our case. The first reply via email was:
“The information you sent has been forwarded to Compass. They will be in touch with you, to work with you both in devising a support plan and discuss the things you have identified and the options for how the care will be provided /employing staff etc.”
Chris replied and asked if we had missed a few steps in the process. We were under the impression that we would receive the indicative budget in writing, the health outcomes plan/care plan would be written up of which we would also receive a copy and be able to have some input and then the plan alongside the final budget would be passed along to Compass. He may have added an annotated diagram of the official paperwork in his reply. The next reply was:
” You should get the figure for the indicative budget through by letter, I will check with our business manager tomorrow re where we are at this end with regards to this and the points you raise and come back to you.”
Chris also called our contact at Compass and asked as they had already received the paperwork, could they tell us what the budget and care plan is? They said no, no paperwork for me received, they had not had any contact with regards to my case at all. Our case manager at CHC replied with:
” I have spoken with Compass today following your contact with them. They are aware that Delene’s referral is on it’s way, but it has not been sent.
I am sitting down with Emma our business manager tomorrow to catch up on all things PHB and identify outstanding actions. I will confirm the timeline once this has been established.
Please bear with us and apologies this is not the smooth process that it should be and that I anticipated it would be when we met. We are receiving the training/coaching as we go along (as this is a trial phase) and are reliant on others for this.
Chris called a few days later at the end of the week to ask if a timeline has been established yet. He was informed that nothing has been done on my case since the meeting almost three weeks ago due to staff sickness, but that they are catching up and should have the indicative budget completed by Monday and she would e-mail it through to us the same day.
At 5 o’clock on Monday, we hadn’t heard anything back. Chris called and was told that our case manager had left the office some time ago. He sent an email asking when we could expect to hear from them. The reply received this morning:
“Thank you for your email, as soon as I have the information I will let you know.”
It has been some time since I have felt this frustrated and powerless. A personal health budget has the potential to change our lives. At the moment, I (that’s me personally, not our household, I’ve divided joint income by 3 and left out Chris’ carer’s allowance and the little one’s DLA) am living on a weekly budget of £45 and with that I pay my share of household bills (water, electric, broadband, insurance), diesel for the car, all food, household items, furniture, DIY supplies (we now have insulated flooring in part of the house, but we still use fleece blankets over the windows as net curtains/isolation, the winter heating bill, clothes, furniture, going to the swimming pool (my rheumatologist recommends three times a week, I can afford once maybe twice a month), eating out, ordering in as well as any and all adaptive equipment.
Realistically, I can’t even afford buying myself a spoon that doesn’t dislocate my wrist whilst eating without some serious budgeting. A personal health budget has the potential to completely change our lives. I stipulated that there are four desired aims/outcomes that are important to me at the moment:
- Prevention and management of symptoms
- Autonomous independent living
- Reliable safe care with a sustainable care role for my husband
- Having a family life
If I receive realistic funding towards achieving these, I can’t even imagine what my life would be like. Chris first thought was – would we be able to afford a holiday? We have been together for 12 years and we have never been on holiday. I haven’t been on a holiday since we hired a self-catering chalet near the beach when I was 13. I have never stayed in a hotel for more than 3 consecutive nights in my whole life. I don’t think I fully understand what a holiday is.
I think about how long we save up to make the smallest improvement to our lives. I think about the less than ideal adaptions that we have. The stairlift that I often do not use because holding the button down to lower the ramp hurts more than the walk down the stairs. The wheelchair that has a custom made back-rest moulded to the shape of my spine three years ago and is now incredibly painful to use due to my body no longer fitting the same mould. I can’t afford to fix any of the issues. I can’t afford to acquire new equipment. I spend my evenings curled up in bed crying because everything hurts and the strongest pain killers in the world doesn’t really touch that kind of pain. The kind you have from doing all the wrong things in all the wrong ways all day long and then its time to pay up.
I am tired and I am so tired of hurting and being told in one meeting that there is a magic wand that can make my life so much easier, than can help me manage daily life in an independent, dignified and less painful way feels a little like winning the lottery. A friend of mine actually remarked that it does feel a little like we won the lottery but we have no idea if we just won a fiver.
I have been given no indication as to what level of funding will be provided, it may not be enough to make any difference, but just maybe, maybe it could be. Maybe it could buy the things I need. Like a sensor pad for the lovely multiple-thousand pound loo that the disabled facilities grant paid for that dislocates my elbow with daily use. My elbow is bruised, the nerve is starting to pinch and the skin is scarring, which is a bit of a depressing compromise for being able to go to the loo without assistance.
So much is riding on this whole process for us. I don’t know if I can afford to turn the heating on for more than an hour a day until I know whether I might be able to spend some of my personal budget on the heating bill. Chris is drowning under the pressure and work load of being a carer for two whilst doing a degree and struggling with his own health issues and I don’t know if there will be support in place before he has another stroke. I don’t know if there will be any support available at all if he does have another stroke.
I am again at the same impasse I was when Aeryn was born. The current situation is not sustainable. I realised that 6 months ago. In six months of phone calls and meetings, nothing has happened. CHC has not provided any help whatsoever and there is still no end in sight, no estimate how long this all might take other than the ones we have already blown by. There is no information, we just have to wait patiently whilst their staff receive training. For an organization that has quoted the phrase “We have a duty of care” to me more than any other body I have dealt with in all the time I have been sick, it sure doesn’t feel like anyone actually really cares what happens to any of us. You would think keeping the person who provides the bulk of my care for free fit and able to continue to do so would be a high priority. You would think some support would have made it our way in the months since I made contact to say we need help and can’t cope without it.
I hate feeling frustrated and powerless and that is how I feel. The longer this all drags on, the worse it gets and it sucks. I read the the official websites on personal health care budgets and it all just sounds too good to be true. Maybe that is it. Maybe it just is too good to be true. It’s hard to remain optimistic sometimes, when health issues flare up and its cold and I am tired and grant adaptions are falling to bits (with all the drama and confrontation that entails), red tape is so long and the process goes so slow that I am sometimes convinced it has come to a halt and nobody bothered to inform us. It reminds me of when the little one was born and Chris just had a stroke and I was having seizures and we yelled and screamed for help that did not arrive until it was so late as to be almost ridiculous.
But here’s to maybe someone proving me wrong. We wait and see. You never know. Maybe, some day, eventually, something more than meetings, phone calls and emails will actually materialize.
I am acutely aware of the global impact being sick and having a disability has. I live my life in this tiny little glass box, able to see out, but unable to leave. If I try, I get worse. Everything gets harder and then, within days to weeks (if only it was months to years, I could work with that!), I become less able to do even the little things I have worked very hard to achieve some independence through.
I can’t hold a toothbrush, I can’t turn the adapted tap handle, I can’t get out of bed no matter how hard I try. Joints dislocate more frequently and with no time to recover in between, things snowball. It takes longer and longer to get them sort of back and the damage done in the process increases as my muscles are too tired to compensate. My asthma gets worse, my blood pressure issues get worse and I faint more. I can’t sleep and I start to forget things, like when to eat or to drink water.
The harder I push, the less able I become until, eventually, I have a seizure and the migraine to top all migraines that becomes the last straw to break the camel’s back. I am stuck in bed, unable to move an inch and in that quiet dark room realisation eventually dawns. Willpower is not my friend. Living with Ehlers-Danlos Syndrome is a game of chess. Outsmart, do not try to outrun.
There is an inherent guild so closely tied to impairment that I am not sure if I will ever be able to move beyond it. I feel guilty for not pulling my weight. All the time. I feel guilty when I leave my three year old to play with someone else whilst I go nap. I feel guilty for not being as fit and slim as I am suppose to be with my condition. I feel guilty for putting sugar or creamer in my coffee. Guilty over the financial burden I am, guilty for being the ball and chain around loved one’s ankles, guilty for not contributing enough to making the world a better place.
I should try harder, do more, work harder, get better. There is always that in the back of my mind. If only I ate a healthier diet, exercised properly, sat up straight, avoided triggers more stringently, I would be able to take my place as a productive member of society. In practice, it turns out that this is an impossible goal. I am not making myself sick. I am not delusional and I am not actually that self indulgent. There are quite a few obstacles that make it harder, a lot harder, to achieve even the most basic of goals.
My joints dislocate pretty easily. They always have done. Even when I was super fit, before POTS sucked the life out of me in my teens, I had daily dislocations and subluxations that were excruciatingly painful. I remember leading a very active lifestyle as a child. I also remember trying to commit suicide for the first time when I as eleven. There were many more attempts over the following decade because I was in so much pain I couldn’t live with it and it took about another decade after I received a diagnosis for me to learn how to manage severe pain reasonably well. Swimming three miles a day, then running another three didn’t make me feel better. My joints were never stable and my muscles were never quite up to the job to compensate, even when I spent two hours a day in the gym working out. My pain levels have been pretty constant during my life and although I feel better about myself when I am fitter and I really do enjoy physical activities, it has never made a significant impact on my joint related systems.
Fatigue is probably my biggest nemesis. I remember a time when there were times where I wasn’t tired. I do not remember a day where I wasn’t absolutely shattered at some point. That’s the thing about living with chronic, constant pain. It’s exhausting. As a child, it was the type of exhaustion I could manage as long as I had regular breaks and a good nights’ sleep. Once I hit my teens, I started having dizzy spells and palpitations and fatigue so crushing I didn’t think I could lift my arm enough in the morning to get out of the covers, never mind being able to get out of bed. Eventually I was diagnosed with Chronic Fatigue Syndrome and then, later with POTS and a bunch of other dysautonomic conditions. Being tired is something you can learn to live with, but not without making some major concessions. I decondition extremely quickly. Three in days in bed with a migraine and when I turn over in bed my heart rate shoots up to 130+, becomes irregular and my blood pressure plummets. It takes days to be able to work back up to being able to sit down and get up without fainting or getting so dizzy I fall over and weeks to get back to being able to walk from one room of the house to another. It takes about a month to make it to the bottom of the back garden.
Getting fit is an elusive obstacle. I have severe migraines more than 4 days out of 7 that confine me to bed and when it takes about a month to recover after, there is never enough time. Just as I get a bit better, I slide back down. In an ideal world, I would do some exercises in bed, I would keep my muscles as toned as I could, but in practice, when twitching makes me cry, doing leg exercises is just beyond me. I sleep and I try not to move and eventually, the pain subsides enough that I can get back to working on muscle tone.
My asthma is controlled at the moment with multiple medications including a steroid inhaler. I have an atypical type of asthma. Initially diagnosed as Brittle Asthma Type 2 as I was completely asymptomatic except for the occasional life threatening rapid onset attack, things changes when I relocated to the humid wet cold climate in the UK. I started having regular symptoms, first just in the winter, then also in the summer on hot days, then whenever I got out of breath and eventually, all the time. I couldn’t sleep, I couldn’t walk, I spent a lot of time in hospital. I stopped breathing a few times and ended up in ICU. I eventually ended up with an excellent specialist in a specialist hospital clinic who found a combination of meds combined with trigger management that helped a whole bunch. Pregnancy also helped and my asthma has been significantly better the last three years, but I still have regular attacks, they are still quite severe and I am still boxed in by them. Exercise is a trigger, dust is a trigger, cold air and being at the upper end of a healthy weight isn’t doing me any favours.
This balancing act between triggering and treating pain, fatigue, breathing issues, circulation issues, chronic migraines, dislocations and a bunch of other stuff I won’t get into now, makes it extremely difficult to make yourself better. I am also aware that getting better is not the best of goals to aim for. Stabilizing symptoms is a much better and more realistic outcome.
I do the best I can. It isn’t nearly good enough, but it is the best I can do at this time. Having more help is certainly helping, getting less stressed out helps too, learning to make sure there is time for enjoyable activities and building in time to be sick and out of commission in the schedule also makes a huge difference. As our house becomes more accessible bit by bit and I am able to do more without hurting myself in the process, my outlook begin to change.
The glass box feels less like a cage and more like a safe haven. Instead of constantly trying to break out, I realise that it is not a static box. I can grow it, if I nurture it and I shrink it when I push too hard and damage it when I pound on the walls. The box isn’t there to contain me, it’s there to support me and enable me. It’s a common error in judgement to view aids as confinement. “Confined to a wheelchair” used to be a popular expression. I certainly sometimes resent my ‘chair. But it has enabled me to things and go places I would not otherwise be able to do.
My box keeps me safe. It provides a space where I can breathe freely. I see people walking around freely and for an instant, I am jealous. Then I realise that my box is invisible to them and theirs are invisible to me. Maybe everyone has a box, different shapes and different sizes, but everyone has their limitations and their own obstacles to overcome. Life isn’t easy and for the most part, our hurdles are private, personal things invisible to the world. Even when they are visible, in the shape of a wheelchair or visible disability, others only really see the tip of an ice-berg. It is a tiny glimpse and we can’t imagine what someone else’s life is like, particularly not someone we pass on the street for just a moment.
Our boxes keep us safe. From the outside world, somewhat, but mostly from ourselves. I am my worst critic. I constantly judge myself and I always come up short in my own estimates. Nothing I do is ever quite good enough and I never try hard enough. Maybe some day, hopefully soon, I can let go of all these negative emotions. I was so stressed out by the meeting on Monday I had a seizure followed by a six day migraine that is only now starting to lift. Silly me. The meeting continued without me, Chris and I had made notes for it together, and it went as well as these things can go. Definitely my own worst enemy.
I am generally a pretty tolerable person. I forgive easily and try to give people the benefit of the doubt. I give second and third and as many as you need chances to the people I meet because I choose to believe in good intentions and that except for the rare exception, people mean well and they do try very hard to be stand up citizens. I do not extend this courtesy to myself and maybe it is about time that I do. If it wasn’t for the box, I would disregard all the warnings my body give me and keep going until I fell over. Even in the box, I am always pushing and hammering and trying all the doors.
Boxes are not bad things. They could be quite comfortable things. Even a home maybe. Maybe they aren’t prisons, their function not to trap and in their own, limiting way, they could hold the key to freedom.
The impact of multiple assessments, tests and meetings on someone with a chronic illness and disability
I am stressed. I wanted to spend my morning writing up a first impressions review for our gaming and technology site, but instead I am writing this. I can’t think properly. I am cold. I have chilblains and blisters on my hands and feet that hurt enough to be distracting. I have a migraine, still. I have been throwing up regularly for three days. I am not hungry. Or thirsty. Or in the mood for anything. My left shoulder is partially dislocated and my muscles are so tense that its been three days since last it was anywhere near the right place. Now I also have diarrhoea, my period has just started, it’s sixteen degrees in the lounge and my chest is pretty tight. My blood pressure is low, my blood sugar is low, my pulse is at a whopping 139 beats per minute at rest and I can feel (and the monitor says) that it is irregular. My body is doing such weird things that the monitor (identical to that used in hospitals, very reliable piece of technology) is starting to give me error message so I pack it away. Doesn’t really matter does it, I can tell that things are not the way they are suppose to be.
Most of this I am pretty sure is stress induced. I have a meeting with the nice ladies from CHC at 2 pm. I am not being sarcastic, the people currently handling my case have not done anything that warrants this amount of stress. I am stressed out for three reasons.
One: CHC is my least favourite organisation.
I would rather go to the dentist for a root canal (don’t forget local anaesthesia doesn’t work on me) than have a meeting with anyone from CHC. This is the organisation who submitted me to multiple physical assessments that included a bunch of people watching me get dressed and undressed and have a shower multiple times whilst they write up notes for a report that states whether they think I need help getting naked or not and whether I am actually in pain or not or whether I can fasten my bra (“Please demonstrate how you would do it”) or button my jeans.
This is the organisation who sent someone out after I had filed an official complaint over said assessments who spent three hours in a fact gathering meeting at my house, walked out and called social services from my doorstep to report us for child abuse because she didn’t notice my husband feeding the baby and felt that a toddler who dislocated an ankle was in too much pain (so do we!). I was crying whilst I was explaining to her that the little one’s team was still working on solutions and that her rheumatologist has recommended we handled it just the way we were handling it, but it was really very hard to rock her whilst she was crying and screaming and not being able to do anything more).
It’s the organisation who have proven more than once that they have no idea how to support me. It’s the organisation who wanted to provide Nitrous Oxide as pain relief at home, despite my objections that it was not required and rather volatile to store and particularly with an infant in the house I would not feel comfortable doing so. They have suggested fitting ceiling hoists throughout the house so I never would have to move (uhm, that’d make me worse, no thank you and also present its own set of problems as I’m sure if I never moved, lifting me up in a sling is going to dislocate all sorts of things) and fitting a ceiling fan dryer in the bathroom because I couldn’t dry myself (I asked for towels maybe with some hooks sewn on as I keep dropping towels and falling over when I try to pick them up, even when I’m sitting down as warm water makes me very dizzy). My last care package, the one I refused after the child abuse report, was for more than ten, I think it was 14 hours of care per day, seven days a week. It was a package implemented by CHC and I was not allowed to adjust, amend or cancel any unwanted care.
It’s an organisation that took over my whole life. They called my specialists, arranged appointments for me that both my specialists and I agreed was not required, reviewed my prescriptions and made suggestions as to what they thought was appropriate medication and what wasn’t. They commissioned reports without my knowledge or permission, refused to provide any equipment at one point despite the occupational therapist who carried out the assessment having submitted a list of relevant equipment and then, months later, fulfilled equipment provision is a rather strange manner. They provided a mattress and two push-button soap dispensers that is still sitting in a box as they have to be screwed into tiles and we never had the tools and skill to affix them (we asked but they responded that getting equipment in place was our responsibility, if we can’t screw it onto the wall, its up to us to pay someone to do it for me).
Most of all, it’s the organisation that completely and totally disregarded my priorities. I qualified for CHC care in April 2011, at the time I had a 5 month baby at home and a husband who had had a stroke a few months before she was born and who was still recovering. My family was my life, they were my priorities. CHC refused to even acknowledge their presence in the house. Carers from their care agency would come in and say “Who is this?” and I would say my husband and daughter. “Oh, we thought you lived alone. The case file says nothing about anyone else here living here.” Precisely.
This is the organisation that allowed me no privacy. I was not allowed to put a chain over my front door. My front door key was stored in a key safe by the door and the code was kept on file at the care agency. Carers let themselves in (even if we cancelled care, sometimes they just ignored us as we didn’t have the authority to cancel care) whenever they arrived. Quite often, no knock, no warning, at 7 am some strange person (we went through dozens and dozens in less than a year) just walked into our house.
It is more than two years later and I am trying very hard to let all of this be water under the bridge. The office has a lot of new staff, policies have changed, procedures are changing, today’s meeting is actually to start setting me up with a personal health budget, something I would very much like and something that would be perfect for us, but still, I am really struggling to let go of the anxiety, stress and fear that instantly surfaces when I come across CHC. I get anxious whenever we drive past their building in Devizes. I have never even been on the premises, but just seeing the sign makes my heart race and my palms sweaty.
You never know what’s going to happen. You never know if a meeting will be good or bad. You never know where you stand. I find that very stressful.
Two: CHC meetings are always long and complicated
I don’t mind quick meetings. I don’t like them, I don’t enjoy them, but I don’t mind when a meeting has a purpose and a goal and hopefully within 30 minutes, we achieve that. CHC has the longest ,most drawn out meetings in the world and after 2-5 hours everyone is just talking in circles. I often can’t summarize the outcome of a meeting because I totally loose track a quarter of the way in and then it starts to feel like an interrogation. I get tired, stressed and usually I have taken some strong pain relief to make it through the marathon meeting and so I just start to ramble endless about nothing in particular. Nobody ever stops me or steers me back on track. There are always a ton of questions, a ton of paperwork and nothing is ever applicable to my situation. I get the feeling that CHC usually either deals with the elderly who are severely incapacitated and have no idea what’s happening or someone who is paralysed from the neck down and uses PEG feeding. Their forms definitely suggest that these are the type of scenarios they are comfortable dealing with. Absolutes. You can or you cannot mobilize. Grey messes like pain and fatigue confuses them. Variable conditions confuses them. I am one big exception to all the assumptions their paperwork makes and that makes it very difficult to fill in pages and pages of forms that are not actually applicable.
Three: CHC meetings are terrible emotional experiences
The things that matter to me never make it into meetings. The things that I have trouble with usually fall through gaps. Issues I don’t have are everywhere and by the end of two hours I start to feel as if I have fallen into another universe. Nothing I say makes an impact, I explain, over and over, what my needs are, what support I need and I try so hard to fit into their forms, but I don’t and it invalidates the whole process. I feel like a fraud, like there is something wrong with me, like I have the wrong disability. I feel marginalized and ignored.
Today should be different
Today’s meeting is suppose to be different. I have read just about everything available on-line about personal health budgets and it is my understanding that the whole point of introducing them is create custom support based on my needs and my chosen priorities. Today’s meeting is suppose to be about me and not about my disability. We will see how that goes.
Read more about personal health budgets at http://www.personalhealthbudgets.england.nhs.uk/
I no longer live alone. In fact, the period of my life where I was alone has dwindled to a tiny slice in the pie of my life. I have been married two and a half times longer, for one. Looking at how I approach things in my life, I often still feel as if I am alone, as if I am the only person who cares about my priorities, as if only I know how difficult my life often is and the worst one of all, feeling as if loved ones have it easier than I do. I know none of these are true, but in a migraine month with seizures, a couple of nasty falls, chronic icky sore throat chesty colds, a flare up of my asthma, an allergic reaction the flu jab and a to do list higher than mount Everest, I feel those familiar sentiments worming their way deeper and deeper in as resentment, fear, anxiety, sleep deprivation and the neurological storm clouds of migraine brings chaos to my thoughts, feelings and life in general. I need help and I have help, but I am not utilizing the help I’ve got. Here is the best plan I have to stop shooting myself in the foot:
1. Accept that I need help
It often feels as if by now I should start to feel entitled to help. After so many assessments over so many years, 95% of them conclude that I need a ton of support and that I am severely impaired and cannot sustainably carry out tasks of every day living without assistance. I live in my bubble where my reality is the only reality I know. The things that raise eyebrows and result in gasps and shoulder pats of pity are quite often things I do not even give my full attention to. I will fiddle with a finger or a wrist or a knee cap to try and slide it back a bit more as I carry on a conversation. I keep working on the site whilst I am having an asthma attack severe enough to prevent me from being able to say more than a word at a time, if that. I am resilient. I know that. And my symptoms, in the greater scheme of things, are not that bad either. Except on the rare occasion where they become life threatening and I don’t mean the twice a week asthma attack that drops my oxygen saturation level below 90%, I mean the really tough ones that drops them below 80%. It doesn’t occur to me that medical guidelines define a life-threatening asthma attack as below 92% and that others follow a different set of rules than I do. The rules they follow are much more lenient for mine.
2. Be patient, wait for help and don’t do it yourself
Yesterday I dragged a dining room chair from the kitchen to the lounge. It hurt my knees, back, wrists and shoulders for hours afterwards and I knew at the time as I lugged it along that I was hurting myself doing this and that there would be consequences. I did it anyway. Last week I picked up a paint brush to help out with the decorating. It feels awful sitting in a chair to all appearances lounging whilst everyone else works. I didn’t tell anyone that standing up made me faint and that’s how I got paint and floor dust all over me. Also that is why I am limping quite badly and hitting my head on the bare concrete floor on landing as my other arms were too sore and wobbly from trying to paint to put them out to prevent that hasn’t helped my migraine. The most persistent, exasperated comment I receive from loved ones is “Please, please stop. Just sit down. You are creating more work and now everyone is watching you terrified of what may happen if we don’t and nothing is getting done.” It’s a statement that makes me feel awful. I do not want to be a burden, that is why I am helping. It takes courage to realise that sometimes the best way to help is to do nothing and just take care of yourself so others can do something other than monitor you.
3. Give others room to do it their way, but don’t withdraw advice and guidelines.
Never ever micromanage. It is one of the biggest mistakes I make. Also, never supervise anyone too closely. Another mistake that I easily make. I hover. It is hard to let people get on with things when I know they will do it their way which may not be the right way. Thankfully, I am not the type of person to obsess about procedures, I really do not mind how anything is done, so it could be worse, but I want a particular end-result. I want food to turn out the way I like it. A bit too crunchy and I get mouth sores or worse dislocate my jaw chewing, a bit too rich and I have heartburn all night. I look at a dusty spot and wonder if this is going to lead to a night of breathing problems. My life is filled with triggers, so many I cannot avoid them all, but I try to avoid as many as I can without becoming neurotic. That seems to be almost impossible as well as I have an obsessive compulsive nature, but I work at it as much as I can. I know that tasks seem easier when someone else do them. I made a list, follow the list and it should lead to perfection. I also know that it does not work like that in practice. Problems crop up, time constraints kick in and everyone has to pick their priorities and their top priorities will not necessarily be the same as mine.
It is very easy to spot flaws and things that haven’t been done or done badly. If I follow this path of least resistance, it tends to lead to a glass half empty view of life. I see flaws, errors, mistakes, half-finished projects and not only do I get depressed, I start treating the people trying to help with some resentment. Once I begin to focus on the positive and particularly on the initiative taken – a hot water bottle ready in bed to warm my feet, laundry done because the basket was full, a cat forgotten outside brought in – life gets a positively rosy tint. It is easy to feel as if nobody understands and nobody cares. It is quite often an incorrect assumption and noticing the things that are done makes it easier to feel grateful for the help and support provided than it would be to feel resentful for overlooked details.
4. Sharing is unavoidable, it’s never too late to learn how to do it well
I meddle and interfere. I know that and so it is that I have an on off switch when it comes to working with others. I ask for help and then I leave. I am absolutely terrible at sharing. I do think sharing is one of the most difficult things to master and as I try to teach my almost three year old the difference between sharing and taking turns, I realise that it is a skill I have not mastered. We share the herb garden. This means that we have to agree on which herbs we get, where we plant them and what we do with them. I want to use them in recipes, nothing livens up a potato salad, pizza or boring sandwich like fresh parsley, oregano or mint. She likes picking the leaves and smelling them, that’s what her garden is for. I think that’s a waste and she is mortified when I want to chop or boil them. “NOOOOOO, you can’t do that!”, she says and then grabs them and straightens them out carefully, “they are for smelling, like this, I will teach you.”
I think the secret of sharing is having an abundance. It is harder to share one biscuit than it is to share a plate of biscuits. It was very difficult to share one small pot of parsley, but it is becoming increasingly simpler to share the thriving huge bushes as we can both have as much as we want without affecting the other. Sharing, in a lot of ways, are letting go of things and embracing people. I am all for that sentiment. I love having a clean, neat, tidy house, it makes my life just that much easier. I can’t always see or hear very well and when I stick my hand into the spoons and I am cut by a knife hiding there, my first reaction is one of annoyance. Then I take a deep breath and think how much worse I would be off if someone else hadn’t stepped up and washed the dishes and packed them away. Sharing is very difficult, but the more I do it, the more I realise that the benefits of sharing well far outweighs any consequences. People are more important than things. And when it comes to people, the whole is bigger than the sum of its parts.
5. Set long term goals and create timeless guidelines
I am a keen list maker. This helps tremendously. I am very bad at consistency, this really doesn’t help me work well with others. I make lists, I organise tasks and then as life unfolds, all my lists and organisation falls apart under the pressure of time. There is an outdated meal plan tacked up in the kitchen. There is a weekly task list with last centuries’ date on it. I never got around to updating it. A migraine happened. I forgot. The little one got sick. We had a slew of doctors appointments that for some odd reason always come in clumps. My to do list slowly fades and it leaves everyone else wanting to help, but not sure what they can do.
The best solution I have been able to come up with is to create timeless lists that do not require regular updates. For regular tasks, I am starting to use a Google calendar more and more to schedule these at regular intervals. I try to let general low priority tasks slide and to focus on safety first. For example, a sharp knife in the drawer instead of the knife rack is a potential injury waiting to happen, a mixing spoon put away with the dessert spoons is not. My personal priorities are safety (tripping hazards, sharp stuff, hot stuff) and access (keep passages clear and clutter free and the loo seat down without the little one’s training seat left on it). If I start focusing on filing books alphabetically and tuck sheets in with hospital corners, I take a deep breath and find something else to invest my energy in.
Living with a limiting condition is complex and personal. It isn’t fun having to ask for help with intimate tasks and it is hard to admit that I often use the stairs, which is why I have had three stair related falls this month, instead of the stair lift because holding down the button to lower the ramp dislocates joints in my hands and I would rather play the odds, after all I do not fall every time, than summon someone to come and push a button for me. I am impatient and spending my life waiting for other people and then waiting for the lower ramp to ever so slowly drop down before I can even start going down the stairs is hard for me to do and keep doing repeatedly. It is often easier, quicker and more to anyone’s liking to do something themselves and do it just the way that they want it. In the long term, it is counter productive and when you can only do a small number of things each day, life turns into the dredge of every day things that never ends and does not really matter.
It is difficult to plan wisely when your brain is in chaos due to lack of sleep, chronic pain or some neurological issues, but it is important to take a step back and sit down and plan anyway. Even if planning never makes it as far as meal plans, at least think 12 hours ahead. Spend time wisely. I try to choose one thing to do every day that makes me feel as if I am contributing to society. I also read the bedtime stories every night to my almost three year old even if I have to be carried to her room or can’t hold the book. I have one weekly lunch that I only miss on extremely bad weeks. I would not be able to do these things unless I allowed other people to help with the every day things.
Asking for help is difficult, but it is worth it. Things that wouldn’t get done otherwise do get done, unreliable households like mine become more stable and reliable and most importantly, if you get it right, the people who help become more than just people who help and it turns out that sometimes they help in subtle ways that I am not sure they even realise. The gardener who brings his friendly dog along that has the little one running from window to window, impatiently waiting to be let outside to stroke him whilst the cat hisses and claws at the glass door makes me smile. Hearing about other people’s lives and families makes me forget about The Headache I’ve had for much too long just for a bit. Having people around helps. I still need quiet time and breaks and a room to retreat to, but being able to ask for the help that I need rather than having to just accept what help is on offer is nice. And once people learn just how you like your tea and when to talk and when to leave you be, that’s when you know that the helping hands you have surrounded yourself with are invaluable.
I am a firm believer in fear. If something is scary, there is usually a good reason to be scared. I have been falling down flights of stairs for twenty years. Usually its half a flight or maybe one, occasionally it has been two or three. I was terrified of heights for a long time, or I thought I was, until one day at an old castle I insisted on climbing a spiral staircase and when it was time to go down I didn’t want to.
It was in that moment that I realised I was not scared of heights, in fact, I love grand vistas and gorgeous views, I was scared of the stairs. I can’t remember encountering a staircase on a regular basis that I haven’t fallen down. Each house we have lived in, each school I attended, each job I had, I remember in part by its stair cases and how it feels to fall down them. The metal bar ones are the worst, the one in the country cottage ended abruptly against a heavy front door that dislocated my shoulder every time. I used to always pick the back staircase if there is a choice so that if I fall I don’t do it in front of an audience.
I don’t often encounter staircases any more. We use the wheelchair almost all the time when we go out and even when I don’t, I stick to flat even surfaces I know well. The house has a chair lift and I use that except when I can’t, which is quite often. Sometimes sitting down just hurts too much, other times I can’t hold down the buttons to lower the ramp and don’t have help around and occasionally I feel that I am perfectly capable of descending or ascending a few stairs. Often the latter end with me in a heap at the bottom, having collided with the metal bars of the rail at the bottom. They are sharp with jutted edges and possibly the most dangerous thing in the house to collide with. Once a week I go round and clean blood off the bottom. That sounds horrific, it really isn’t that bad, they are just sharp metal that doesn’t go well with fragile skin.
It is harder to adapt to not doing things that you are capable of doing occasionally under the right circumstances as long as you are willing to take some risks. Falling isn’t that big a deal. In Social Services Land, it’s massive, but in real life, it’s a bit more like a toddler that falls over half a dozen times a day, cries and goes back to running ten minutes later. It hurts and often leaves some spectacular bruises, particularly on legs, nobody ever sees my legs, but more often than not, I can put myself back together again and be up and going within 15 minutes or less. Straight to the freezer to get a cold pack or stumble-trip to the wheelchair or pain meds cabinet depending on variables – how far, how fast, how hard, how eloquent.
I have a strange fascination with stairs. They often lead to secret secluded solitary places. They go up to a better view and down to basements and dark dank places. I like rooms without windows. I love rooms with a great view. I grew up in a country where staircases were a rarity. Houses were mostly bungalows, most buildings were single story and as a child I used to stand at the bottom of the staircase and look up and try and see as high as I could see. My hospital had ten stories and I would beg to use the stairs that were lined with windows and each flight took me higher up and changed my perspective on the world below. I would lean over the edges, to my mother’s horror I think and look down every few steps. It was the looking up and down that really fascinated me.
Stairs are dangerous things when joints abandon you at any point without warning, but in some ways that makes them even more appealing. It’s a feat of strength. I climbed the staircase at Mottisfont. It was a day on which I was doing really well and I really wanted to try. The staircase was nice and deep with decent rails and plenty of places to stop. Supergirl helped me up and I thought Chris was going to have a panic attack when on two steps down my kneecap wobbled and I slipped a little. We made it up and down in once piece with no falls and I was grinning as we left. I felt a great sense of accomplishment despite also feeling a great deal of pain and it was a thoroughly exhausting day.
A few weeks ago I went for an interview in Yeovil. It was not one of my good days. I hurt my hip when we set out and I was in agony the whole way there. On arrival, there was one step at the door. Just one. My wheelchair doesn’t do steps. I couldn’t get from the parking spot to the door nevermind up that single step. It just was not a day that allowed me any wiggle room. It is a very unpleasant sensation, that claustrophobic sense of being stuck, of knowing that where you want to be is just a little way away and yet you can’t get there. It reminds me of that sense of helplessness after a bad fall when I am lying on the floor and suddenly realise I cannot get up. A turtle stuck on its back.
Turtles are actually deceptively not stuck. They often land on their back and can stay there for hours but eventually manage to turn themselves back round. Sometimes I feel like a turtle, wriggling my way back to a mobile position. Sometimes I just feel stuck.
Supergirl points out stairs and steps when we go out. “Your wheelchair can’t go up there, Mummy. Your ‘chair doesn’t do steps. Mummy, there isn’t a ramp for you, can you walk or are you going to wait for us here?” Sometimes I wish we lived in a world without any steps or staircases. A flat place with lifts and ramps and gradual gradients.
I have had a bunch of assessments again lately to determine what support I qualify for. Ehlers-Danlos Syndrome is not a very well-known condition and with the secondary conditions/complications that complicate the picture, it is very difficult to explain to anyone how it affects my ability to do things.
I always start with an explanation of what it is. “Ehlers-Danlos syndrome is a genetic condition that makes my collagen, that’s like the glue that holds all the different parts of your body together, weaker and stretchier than it should be. As a result, my joints are unstable as the ligaments that usually hold the bones in place very well don’t do their job properly. I have some issues almost everywhere, with my eyes, ears, lungs, digestive system etc because collagen is everywhere and when it doesn’t work very well that causes problems.”
I try not to use the words “dislocation” and “subluxation” in that first paragraph. I also do not use the word “rare”. I don’t think EDS, particularly the hypermobility type is a rare condition, I think it’s just grossly undiagnosed and misdiagnosed. Despite avoiding these terms, this is the conclusion that most people reach – that the main cause of physical impairment/disability is joints that (partially) dislocate. That’s what the internet said when they googled it before coming to the appointment. Of all the information that is available, that’s the part that stands out because it’s the shocking part. Joints that dislocate easily or -gasp- spontaneously. It is also, however hard I try, my shorthand when I don’t want to rattle of a long explanation. If I am queried about the Blue Badge or the wheelchair or clinging onto Chris’ arm with a deathgrip and asking for a carer’s rate, I start with “I need help because I can’t walk well on my own” and if that requires more I follow up with “My joints are unstable and can dislocate quite easy and I need help as a result”. That usually turns the frown upside down.
Is frequent joint subluxation and dislocations a problem? Of course it is. It isn’t fun when it happens and it isn’t predictable and quite often it happens as a result of a fall and that is very unpleasant as well. I used to have a panic button to carry on me that calls into a call centre as I was spending many hours alone each day and it wasn’t safe in case I had a fall and couldn’t get up or had a seizure. We started with one of the motion detector sensor buttons that would detect falls, but I fell over about once every hour or two and the thing kept dialing the call centre and if I couldn’t get up quick enough to respond, they would send out an ambulance which would arrive about 30 minutes to 2 hours later, by which point I have usually managed to put myself back together again.
The thing about EDS though is that the biggest obstacles are invisible. The first is fear. The second is pain. The third fatigue. It is these things, constantly worrying away in every cell of my body that really limit what I can do. Fear of getting hurt. Once you have really been hurt and experienced that level of pain that makes you want to do anything to escape it, it’s a black cloud on the edge of awareness and once the pain starts to creep up, that cloud moves in quickly. I am scared of severe pain, absolutely terrified.
Pain comes in many forms. Chronic migraine, cluster headaches, bones that move out of place in ways they really shouldn’t. There is the constant pain, often a dull migraine that feels very much like the worst hangover you have ever had. There’s the constant pain of bones that are never quite in place. This is the thing about EDS. The dislocations may at times be spectacular, but the truly horrifying thing is that all my joints are never all in place. Something is always a little bit out.
As I understand it, the pain isn’t caused by bones moving. The pain comes from soft tissue damage around the bones that are bumped and bruised as bones move in ways they shouldn’t. This is why sometimes dislocations or subluxation don’t hurt all that much. If your body adapts, the soft tissue isn’t damaged when joints move in weird but normal-for-you-ways. Unfortunately, there’s no knowing what’s ‘normal-for-a-bendy’ and what isn’t. The only real guideline is if it hurts a lot it’s definitely bad for you. Feeling bones poke out in weird ways throughout your body all the time is both an unpleasant sensation, like you cannot get comfortable in your own skin, and it hurts, a lot. Not as much as when things go spectacularly wrong, but in the aching wearing everlasting sense of pain that just never lets up. If it eases at one point it flares up at another. Something is always off and no matter how hard you work on building up muscle tone or working on a better posture or stretching and strengthening the right muscles, there’s always something that hurts somewhere, if not everywhere.
Fatigue is a big deal. I have blood pressure issues, i.e. dysautonomia, ie POTS (Postural Orthostatic Tachycardia Syndrome). These I usually think are more limiting than the joint pain or any other part of what’s wrong with me. Being tired all time is awful. Living with a tiny little box because venturing outside makes you so tired you feel like breathing is too much work, is claustrophobic. I know the size of the box isn’t finite. It gets a bit bigger when I work hard at avoiding triggers and keeping as fit as I can and it gets smaller when I get sick or I do less or stop working hard. For a long time, I thought that if I can just push through and work hard enough, I can make my box the same size as an average healthy person’s. I was wrong. I’m stuck with a small box. I can expand it and I can shrink it but only within limit, there is no upgrading my box. It will never be a medium or a large. And it’s not my fault.
There’s a hundred things that goes wrong on any given day when you have a serious chronic illness. There is, if you’re lucky, some things that obviously go wrong that makes it easier for other people to understand. But on most days for me, there isn’t a finger to point to a clear culprit. “I have a migraine”, I say, “I dislocated my shoulder/ankle/hip yesterday”, “I had a seizure,” “I had a bad asthma attack”. But none of these really explain why I can’t work or cook or take my daughter to the park. I look just fine, maybe a bit tired with a few bags under my eyes and possibly obviously in need of a hair wash/shower. I wistfully look at the world and think maybe if I try harder, work harder, push through, it will all get better. Maybe if I loose a little weight, eat a bit healthier, take up some decent aerobic exercise, I would be more capable.
Maybe I would, that’s true and all of these are good long-term goals if tackled one at a time. But sometimes, on weeks like this one where I have had a migraine for six days that doesn’t allow me much sleep or brain power, it’s time to realise that it’s not my fault. I can make myself a bit better and I can make myself a bit worse, but I have an incurable genetic condition. Even if I did everything perfectly, it would not make me well.
The invisible side of illness is a strong current underneath the surface of a sometimes deceptively calm surface. The next time you see someone get out of a car and walk when parking with a Blue Badge, the next time you grumble because your neighbour is a benefit scrounger that doesn’t get out of bed until noon, the next time you see someone use a wheelchair some of the time but walk other times, don’t judge. Please. There’s a whole world of misery underneath the visible stuff that you cannot see.
I often feel like I am faking my disability, as if I should be able to do more, as if I should just do more. I have tried and failed countless times. Usually I end up on the floor or in the emergency room with a disapproving husband refusing to leave my side. “You’ll do something stupid. You’ll hurt yourself badly. I’m worried you’ll kill yourself if you keep taking these risks.”
Sometimes, “I can’t”, doesn’t just mean “I am unable to”, sometimes it means “I am unable to do …. safely and reliably.” And there’s the rub. I can pick up my almost three year old and I do. Every time I do, part of my spine shifts, my hip goes a bit out and my shoulder pops half out of its socket. I shouldn’t pick her up, it hurts me to do it, but I want to. I want to because sometimes she needs me to.
Life isn’t black and white. It’s also not transparent.
An 8-month review process consisting of multiple assessments, reviews and a convened panel of experts (including regional heads of departments) determined that I was eligible for CHC care. Almost three months ago now I had an assessment to determine whether after 2 years of refusing CHC care, I am still eligible. The meeting was a bit of a muddle, I was on morphine or possibly Fentanyl and what Chris calls my squirrel impression, flit from one topic to another, usually in quite complicated language in only loosely connected sentences unless I am interrupted. Nobody interrupted and the meeting drew to an end when the bones in my neck shifted out of place, I got dizzy and stopped talking so much.
At the meeting it was decided that yes, I am still eligible for CHC care and that yes, I am a very good candidate for a personal health budget, but they will get back to me on the details as their office haven’t actually done any personal health budgets yet and nobody knows how and it’s a pilot and so yes, maybe it was possible, but there’s no guarantee and someone would have to figure out how it works. The details on personal health budgets are very fuzzy. Chris has been in touch with the woman writing up the report at CHC providing more information as required and mostly we have been waiting to hear back on what will be happening.
I really want a personal health budget. CHC care operates on rules so rigid that I am very sceptical about how we’re going to get much benefit out of the help they can provide. They choose the care agency, they choose the carers, I choose the time, but the schedule is fixed daily with no exceptions, even for medical appointments. I really want a personal health budget.
I have been looking for more information on-line as nobody in any official capacity can provide me with any. Community Care has an interesting article, Making sense of what’s going on with personal health budgets, that states:
“While the current draft Care and Support Bill would place a duty on councils to provide all eligible service users with a personal budget (other than in exceptional circumstances), a different approach is being taken in the NHS”.
It will be up to NHS commissioners to decide who receives a personal budget. I have the right to request one, which I have done, but not the right to receive one. It further states:
“It appears that the DH is proposing that such a request should be granted when the benefits of the person having a PHB outweighs the costs (p13-14 of consultation). But the DH is assuming that about half of the 56,000-odd people on continuing care would receive a personal health budget (so half would either not request one or be refused on request).”
I also found “A guide to setting personal health budgets for people who are eligible for NHS Continuing Healthcare“. Interestingly enough, this document, dated April 2012, states that:
“ Good plans are not therefore narrowly focused only on health needs, but will cover a wide range of outcomes. A plan might include goals which concern:
• social care
• financial security
• family life and parenting”
Does this mean that on a personal budget I would no longer require two carers at the same time, one to help with my care and one to help me with parenting? That would be awesome.
The situation we find ourselves in is still a ridiculous one. I am required to basically have three people on-site at all times. Chris has to be here for significant subluxations and dislocations, a CHC funded carer has to be here to help me get up and sit down, help with my food preparation (and only mine) and help with my personal and medical care and a social services funded carer has to be here to help me with Supergirl, such as picking her up onto my lap, assist me with her food preparation, assist me with giving her a bath and getting her dressed etc. It’s one of the reasons I refused CHC care two years ago and didn’t employ anyone to help with Supergirl for over a year. It’s just too overwhelming.
It looks like we will be able to get a personal budget from social services for all things relating to Supergirl, more on that later and if only we could also get a personal health budget from CHC, we might be able to carve a family care plan that actually benefits us all. At the moment it’s a schizophrenic household.
This is how things work without personal budgets:
(Note – this doesn’t touch on the cost. Imagine how much money is wasted because social services cannot provide any care for me and CHC refuses to provide any support for me with parenting).
Once there are two carers/assistants cooking the same meal, but one can only do Supergirl’s portion, one can do only mine and by the way, nobody can cook for Chris, he has to make his own, we have five people in the kitchen to make sandwiches for lunch and I just want to run away. This is not the environment I want to raise my kid in. It’s not the environment I want to live in. I want to have room to be a family without lots of other people constantly on hand in the kitchen, the bedroom, the bathroom. There is no privacy, no respite, no normality for anyone. Our little family fractures and the more people I add into this equation the further apart we will drift.
We stop having family meals. We end up with Chris, who with his Asperger’s really can’t deal with all these strangers in his personal space, shutting himself in his office with store bought sausage rolls and scotch eggs eaten out of the plastic wrapping, me retreating to my bedroom as just the amount of noise generated by four adults and a toddler is enough to sky rocket a migraine and as I don’t hear well with background noise, I feel more and more isolated as I can’t hear what my daughter is saying over the adults’ conversation. Supergirl ends up eating with the assistant meant to help me help her with neither parent in site. I am not going to create that household. I am already struggling with just one parental assistant here for a few hours in the afternoon.
I want to have a family life. I want to have some privacy and time to be a family. I think personal budgets can make that happen. I think the people in charge don’t give a damn for the most part and although we’ve been lucky with some of the professionals working in the education sector in particular, we’ve not been that lucky across the board. At least at the moment, nobody is actively hostile or threatening, which has happened in the past, but apathy doesn’t really help us much either.
I’m tired and I’m really rather sick and I don’t want to spend my time trying to resolve this stuff. I have so little time when I’m not sick and usually pretty out of it, I’d like to spend that time creating some positive memories for all of us. I am not going to just accept whatever is handed out, I have in the past because it only affected me and I didn’t have the self esteem to object with a “that’s not good enough”. I do now, when it comes to raising a little girl that deserves to get the support she needs in an environment where she can relax, I will find a way to make things work better. There has to be a way to make things work better than four adults making three sandwiches in one kitchen.