by The Chronic Chronicles | Jan 9, 2012 | Hospitals
Today is finally the day I go into hospital for Intensive Rehabilitation. It’s a multidisciplinary affair, so lots of people try and help you all at once over the three weeks, instead of the normal few physiotherapy sessions here, a nurse visit there which doesn’t tend to work.
I wake up at the hotel at 6.20am. We’ve been here twice before as it’s close to the hospital, and will be here each Sunday night. It’s the first of my early starts of week, and I feel sick and exhausted. Breakfast is at 7am and I need to eat something, despite the way I feel, as it’s going to be a long day.
Traffic is bad on the way to the hospital and I begin to worry. We arrive at about 8.15 after being told to arrive at 8.30 and a nurse shows me to my bed – which is on a sectioned bit of the rehab ward, opposite another 24 year old with very similar conditions to me, who has had it for two years.
We’re kind of left to it. I have four small drawers – the top one has a lock, which I’m glad for so I can put my valuables. There is a higher cupboard next to it for some clothes. I find out since I had the introduction the hospital has put in WiFi, so I pay for a month and am very relieved!
The female ward
A nurse then tells me I need to put all my medication into my drawer with nothing else so they can lock it. I need to ask every time I need my medication. I understand why, but find it frustrating as it means I have to remember before every possible session whether I need to collect my painkillers. I also feel like a bit of a child. “Please nurse, can I have my medicine?”
The first session is a Welcome Session, which just goes over the basics. There is one man on the programme, and four other women. Three of us have Ehlers-Danlos Syndrome, which is nice – I’ve not met anyone else with it. They tell us you must attend all sessions. The different teams are Physiotherapists, Occupational Therapists, Consultants, Health Psychology and nurses. Our timetables look a little sparse at the moment – but we’re told our individual sessions still need to go in, and we will have one-to-one physio daily. I see we only have one swimming session a week timetabled in and am disappointed, as I love swimming and don’t often get the opportunity. We’re told if the physio agrees you can have access to the pool and gym alone. I write it on the back of my hand so I don’t forget to ask the physio this afternoon!
A nurse nabs me for a blood pressure test, just as the health psychologist arrives for our session. He asks that the nurse does it afterwards. I HATE blood pressure tests as I find them incredibly painful, so I’m relieved. I hope to get away with it!
We have the session with the Health Psychologist. He goes over behaviour and how we act to one another. He says they often have problems with two people on the female ward falling out. On the male ward they often get two men competing and pushing themselves too far. Afterwards I request some sessions with a psychologist.
Finally, it’s lunch time. Today they just bring out sandwiches, and some fruit juices. Someone grabs the only apple juice, which leaves the orange I’m allergic too, or pineapple. I take the pineapple, and find it causes a reaction anyway. I ask the catering lady whether she can put aside an apple juice for me in future, but she doesn’t seem to grasp my request due to a language barrier. I consider it lucky my allergy is not life-threatening, just an annoying asthma attack.
The nurse pounces on me after lunch for the blood pressure test – damn. Then he says he needs to do it twice as I have Postural Orthostatic Tachycardia Syndrome. My arm throbs for ages after.
We have free time afterwards, with my first Physio and Occupational Therapist (OT) session at 2pm. I have a porter booked, although I can use my chair to get there to show me the way. I am told he will be there at 1.50. Luckily I decide to get dressed early, as he turns up at 1.25. I have a panic over getting the wheelchair to work, before I find the stray plug that’s come out.
My physio and OT are both nice. They both seem the type I could say if I wasn’t comfortable with. The OT says she wants to discuss my problems at work in-depth. I ask the Physio for permission for using the pool by myself and she says of course. She asks me to wait for my first session on Wednesday, to ease me into the first couple of days, and then I will be free any time. It’s heated – yay!
My final session of the day is Pacing. It’s all about finding your baseline level – which should never be measured in pain, but in time, distance of number of activities. So taking housework as an example, if you can just about dust one room then your pain increases, you should dust half a room at a time. When you’ve done that for awhile and feel comfortable, you should add 10% to that. Again, get comfortable with this – and try and add a bit more.
I think it’s something most people with chronic pain do – break tasks down to manageable levels, although many stop when it actually hurts rather than before which I suppose is key.
I just find it quite impracticable for day to day life. You can’t do it as work properly, or avoid things that hurt all the time. The one guy on the programme said he doesn’t have constant pain as such, but very intense short bursts in certain positions. Uneven ground causes his foot to go into that position. However, you can’t avoid it all your life. Sometimes you need to go to a hospital, GP, wedding, friend’s house – anything! You can’t just say no, there is an uneven floor.
The food for our evening meal was very mixed. I had a lasagne, which was okay. Edible. Others had congealed pasta, rice pudding with a skin on it, and other lovely things!
The one man on the programme asked at pretty much every meeting where he could get takeaways from, and how to get to the nearest restaurant. I kind of get his point. Hospital food may be better than it used to be, but I started struggling for options when choosing for day two – so in three weeks I won’t be impressed!
It went very downhill come night time. I was very tired, so decided to get an early night – which I thought would also help come morning. Mum had bought me an eye mask and earplugs, as I have been terrified about not sleeping. I really struggle to sleep unless it’s pitch black, and totally silent. Even so I figured it wouldn’t be that bad. The girl in the bed opposite was snoring so loudly the whole next section could hear her, although she was nothing compared to the noise from the rest of the ward. They had no concept of talking quieter come night time, even when people started drawing their curtain to sleep. Others had on films. The lights were really bright. I turned off the light in our section, so that became not too bad with the mask on, but my earplugs barely blocked anything. People were going in and out of the doors to the toilet and letting them slam shut.
I was finally drifting off to sleep when a nurse pulled back my curtain, making me jump. She informed me she was on night duty, and to let her know if I needed anything. I had clearly taken my eyemask/ear plugs out, so she must have known I was asleep. I mumbled I didn’t, but thanks, and was just drifting off again when again she opened my curtain again and asked if she could photocopy my timetable. I said yes, then asked if she was going to wake us up every night. She seemed surprised, and she said wouldn’t.
Not taking this massive hint, twenty minutes later my curtain opens again and she brings it back, again, without any concept of quietness. Why an earth would they decide they needed copies of something they gave us is in the first place when we’re asleep?!
Overall, a slow, tiring day, with not a lot done. Just lots of introductions, and assessments. The hard work starts tomorrow.
by The Chronic Chronicles | Jan 3, 2012 | Hospitals
Next week I am going into hospital for three weeks, for intensive rehabilitation and pain management.
My Ehlers-Danlos Consultant recommended it and I’ve been on the waiting list for a year. Traditional pain management can be quite sporadic – a session of physio here, looking at medication there and seeing a therapist when it all gets too much a few years later – but on the programme they try and cover everything in the three weeks. They even have craft and gardening sessions as additional sessions.
I’m half excited, half terrified – although the scared bit is about all manner of stupid things. I’m looking forward to learning the proper way to exercise that doesn’t cause damage to my joints, and spending time with people like me. Someone I know with Fibromyalgia went on a similar programme and can now stand longer, and has reduced her medication. So I’m hopeful.
However, the thing I’m worried about most? Sleep. I know, I know, it’s pathetic. But sleep to me is one of the most important things in the world. Because of my exhaustion, I tend to sleep for a long, long time – 12 hours or so, even if it’s not all great quality sleep. My room needs to be pitch black, and completely silent – no clocks allowed, lights covered up. I wake easily, and if I don’t get those 12 hour sleep – I’m a mess. I haven’t been up early, except on a rare occasion since July, when I had to go onto sick-leave, and the programme requires 7am starts. The thought makes me feel sick, because when I get that tired – I struggle to concentrate and my energy depletes, and this is my one chance to try my hardest to get better.
My lovely mum has bought me earplugs and a sleep mask to try and help with the noise/light, but I’m not sure I can sleep with earplugs as they make me feel very vulnerable. But it’s worth a go! My other big worry is about pain. I pay for two treatments a week from a McTimony Chiropractor who also does deep tissue massage. It has been the only thing to ever help with pain relief. And I have to give it up for three weeks. What if I can’t do anything as everything hurts too much? When the pain gets that bad I can’t concentrate, and focus on things. I also hope I’m not going to be the only younger one there – which isn’t a big deal, I suppose – but it’s always nice when you feel a less of an anomaly.
So they are my worries. I hope they are silly and come to nothing, and I really hope this is the start of something really positive. This year I wish to have condition improve lose weight, and get a job I love. That would be a perfect year.
Hope. Credit to Robert Michie
by The Chronic Chronicles | Aug 3, 2011 | Coping Methods, Diagnosis
My pain started when I was 10, and has been constant since I was 15. I saw doctor after doctor and got nowhere.
Some said I’d grow out of it, others seemed to content to tell me it wasn’t arthritis, and send me on my way.
I just wanted to know what it was. I needed to put a name and I pleaded with them for one, but was told they didn’t want to ‘label’ me. I was in non-stop, agonising, soul-destroying pain. I couldn’t go out with friends, I was exhausted and felt completely alone. I thought knowing the name of my condition would make me feel like there were others out there just like me. I didn’t see how it was a label – it was the name of my bloody condition, and I wanted to know what it was.
In 2005 I was told by a rheumatologist I’d grow out of it. In 2008 I got really pissed off, and saw three consultants. In March it was due to subluxation, in July Chronic Myofacial Pain and by August it was simply ‘mechanically related’. What the hell did they mean? They were wishy-washy nothingness!
I was at university one day, and was probably putting off writing an essay, when I put every single one of my symptoms into google and hit search. A condition called Fibromyalgia popped up.
I read down the list and read everything I could about it. It fit me! Everything it said I could relate to. The relief was – I can only describe it as immense. I didn’t even register the bit at the bottom that said it was incurable.
I hit print and phoned my doctors, and made an appointment for that day. It was a doctor I’d never seen before, as I’d fired my previous GP for using the unforgivable phrase.*
I remember the GP finally asking for my symptoms that day. Do you know how rare that it? Most get to pain and stop there, as if the hundreds of other crap that goes alone with it means nothing. He nodded and said yes, it does sound like Fibromyalgia – but you need a clinical diagnosis and so sent me to a Pain Clinic, who still did not give me a diagnosis – but gave me nine facet injections in the facet joints of my neck, and muscles of my shoulder.
It took until January this year – eight years – until I finally ‘hit the jackpot’ by getting some decent doctors and some actual diagnoses. I saw two specialists on the same day, one who diagnosed me with Fibromyalgia, and the other with Ehlers-Danlos Syndrome (and lots of related conditions).
So, I’ve completed the battle in getting the names, and it did help. When people ask what’s wrong, I can tell them rather than shrug my shoulders. I can meet people in the same boat and keep on top of research.
But where do I go from here? My pain hasn’t improved, and in fact gets worse all the time. My lower back seems have gone on the warpath to unbearable levels, and my McTimoney Chiropractor, who usually has magical powers in finding the culprit and sorting it out, even temporarily, hasn’t been able to touch the problem.
Credit to Dennis Taufenbach
Do I keep battling on? Do I keep asking to see new professors who I hear have helped others? Before I got my diagnosis I was going to ask to see an Orthopaedic doctor to try and see if they could do anything with my lower back, but now I have been told I have Ehlers-Danlos Syndrome and Fibromyalgia, are they just going to shrug and say well you have those, what do you expect? Or might they be able to do proper scans and sort out some of the pain? I just don’t know. I feel a bit lost, and am not sure where to turn.
I am on the waiting list for intensive in-patient treatment at the Royal Orthopaedic hospital in Stanmore, for pain management, but it’s still not looking into causes and fixing it.
I guess what kept me going was finding out what’s wrong with me, and now I do, I wonder if this is it?
* The unforgiveable phrase is ‘there isn’t a magic wand that can cure you.’ Did I ask for a magic wand?! No! Just a doctor that does their best to help. That’s all.
by The Chronic Chronicles | Jun 8, 2011 | Daily Life, Employment/Work
For me, work is one of the most important areas to be running smoothly in my life. It costs me an enormous amount to work, but not in money – I pay in pain, energy levels, and stress. It means not being able to have trips out. It means if I have a family wedding I need to take not just the day off – but days surrounding it to recover. It means an extremely limited social life. And this means I want the payoff to be worth it.
I have had numerous issues in the work place over my disability which are often caused by a simple lack of understanding. Sometimes a lack of understanding of my illness, and sometimes quite simply of the law.
My first job was while I was at Sixth Form College, and it was at DFS, a sofa company. The job involved filling out the finance forms for customers after they had purchased a sofa and assisting customers by answering questions about the stock.
My back constantly hurt, and standing was the biggest culprit for causing even more pain. I took the job on the understanding that we were able to sit down when we weren’t serving a customer. Unfortunately, the manager had other ideas, and demanded we continually keep walking in circles around the store – even when there wasn’t a customer in sight. I have to describe the act of walking around with pain shooting across my back and down my legs, while surrounded by comfortable sofas, as something akin to torture. I was desperate for customers to come in, so I could snatch a few blissful moments on a sofa while I took their details.
I had absolutely no idea of my rights, and had never heard of the Disability Discrimination Act (now the Equality Act 2010). Not to mention I would never have dreamed of calling myself disabled at that age. I worried if I complained or was caught sitting down, I’d be fired. One day I was phoned to say they didn’t need any casual staff any more, but when I contacted the other staff – found I was the only one who had got this message. I assume in the end, the manager got fed up with me hobbling around, regularly collapsing into seat when I was unable to bare it any longer. Not that I could prove it.
My second job was at a tourist information office. It was fast paced, and my fellow colleagues were sympathetic, and took on the physical jobs, while I in return did more computer based work. But yet again I ran into trouble with my manager. I had told her about my pain condition, and learning from my previous mistake, had carefully detailed what I could and couldn’t do upfront in the interview and was thrilled to still get the job. Yet she couldn’t grasp why it was difficult for me to do certain jobs, and seemed to take an attitude I was just being lazy. She would purposefully pick me out to do physical jobs, while everyone seemed to look the other way.
After university, I was unemployed for some months. While the JobCentre agreed I could only work up to four days, with no standing, or heavy lifting, they began to get difficult about it. They sent me jobs for things I couldn’t do saying I had to apply for it, even if I physically couldn’t do it. One of the jobs was sorting Christmas mail at Royal Mail, another clearing a shop floor. I was told I had no choice but to apply, or I’d be sanctioned.
Job Centre Plus (Photo credit: Wikipedia)
I’d been sending out application after application with no response. I had even made an appointment with the Disability Adviser, hoping for some tailored advice, but instead just said “just continue with what you’re doing.” Some employers I applied for operated the Two Ticks scheme, which works around the basis that if someone ticks
they are disabled and they meet the essential job criteria – they have to offer them an interview, although having applied for a number of these jobs and not heard anything back at all, I’m not sure how it works in practice.
I do think this is a great idea however. I don’t believe it gives people with a disabilities an advantage, as some feel. Instead it’s the combat the very common attitude of employers dismissing disabled people right away – feeling they’ll be off sick a lot, or will be nothing but trouble. The scheme does not guarantee you a job, but allows one small barrier to be broken down and give the employer the opportunity to meet the applicant, and see their skills and work ethic before deciding whether to dismiss them or not. The Depressed Moose details some more issues with the Two Ticks Scheme here.
It’s also a very difficult decision whether to tick it or not. I applied for a job covering a maternity leave at a university and got an interview. In the interview I was asked whether or not I needed any adjustments, and I explained the restrictions. I was then offered the job, but in the conversation the head of the department asked what my disability was. I can’t remember what I said (I didn’t have the diagnosis then), but fatigue must have been mentioned, as her tone changed as she asked if I had “one of those chronic fatigue type things”. I said no, but fatigue comes into it. She then practically withdrew the job offer, saying she was worried I couldn’t do the job, and they had no time to find anyone else if I took it and then quit. I said I could do it, and she ended the phone call saying she needed to think about it.
What she did was very wrong. First of all she had no right to ask me what my disability was – other than as she had done before in regards to adjustments. She also had no right to withdraw the job offer purely based on my disability.
She rang back the next day and said the job offer was conditional on me seeing their occupational health, which was fair enough. I was cleared. It turned out her husband was severely disabled, and she was very understanding with me and was a good manager. But she could have faced legal action on the basis of her reaction. My line manager then went on to say I picked the job up quicker than anyone she’d ever seen, and was always commenting on how efficient I was, which they wouldn’t have seen if they’d chosen to allow a symptom of fatigue to cloud their decision.
Some parts of the job not mentioned in the job description got more difficult for me. It was advertised as an office job, but it actually involved a lot of physical activity. Most of the people in the office were understanding, and some took on a few minor tasks I couldn’t do. One junior manager took umbrage at this, and made the atmosphere unpleasant to the point of him ending up being disciplined for his behaviour towards me. The same junior manager also extremely offended someone visiting an office by declaring dyslexia didn’t exist, and people were simply lazy. It turned out the visitor had dyslexia and got very upset and explained that it was nothing to do with laziness, but processes in the brain, not that the manager took any notice.
Finally, I found an understanding manager in my third job, who is sadly leaving today and the charity I work for is being taken over by another one. My manager had previously lived with chronic pain herself, she understood sick leave, being able to only work on certain days and made allowances for me to work from home. This has led to some minor grumblings within the team, and the idea I was getting special treatment.
What I try and explain to people is that some people need additional help in order to be equal with everyone else. When someone is at a disadvantage, providing additional support isn’t favourable treatment, it’s helping them to reach the same level as everyone else.
Sadly, not everyone sees it that way.
It’s incredibly difficult to find an employer that will take people on with my multitudes of health problems. One bright side is that the Equality Act 2010 has given additional rights to disabled people that may help in some ways, such as not being able to carry out pre-employment medical questionnaires, or ask about a disability up front. Yet employers continue to do it. It’s also difficult to hide visible disabilities, like going into an interview with a walking stick.
The difficulties I have had make me worry even more for all the people being taken off Incapacity Benefit and assessed for Employment and Support Allowance, but instead being declared fit to work. Some even find themselves turned away at the JobCentre, as they’re declared not fit for work!
All I can suggest is keeping an eye on your rights, and fighting for them when you can.
by The Chronic Chronicles | Jun 4, 2011 | Diagnosis, Hospitals
Most suffers of a chronic illness will tell you how difficult it is to get a diagnosis. The first difficulty is often the doctors, who simply may not know. So many conditions have overlapping symptoms and tests don’t always get to the root cause quickly. Often it takes a doctor that will look at the whole picture, not just run a blood test here and there. I recently heard of a woman whose local doctors wanted to take her thyroid out, believing it to be the cause of her issues. It took a consultant in London who finally ran the correct scans to find out the problem was with her heart, and could be corrected with medication – scans that could have easily been done previously.
Other doctors may be unwilling to commit to a name of condition – perhaps through fear of being incorrect, or other reasons. Some think giving a name of a condition is branding the patient with a ‘label’.
When you’re so unwell it’s impacting your life, the vast majority of people want to know why. They want a to find out what’s wrong with them so they can research their own condition, or join a support group, or simply so when people ask what is wrong with them, they don’t have to shrug and say ‘your guess is as good as mine’.
Woolly symptoms like ‘pain’, ‘fatigue’ (and I’m sure you can name a million of your own) are hard to explain to people, when you’ve cancelling a night out for the fourth time in a row, or taking more sick time from work, or even applying for benefits. Everyone has those symptoms at times, and it’s hard to understand what it’s like when they become an every day occurrence, or never go away. Or when the pain or fatigue become so crushing you can’t function.
Another problem with chronic illnesses is making sure you’ve got the right diagnosis. Due to the aforementioned intersecting symptoms, it can be hard to pin down exactly what’s wrong with you.
For example constant pain, fatigue and cognitive impairment could be down to a virus, or ME, Multiple Sclerosis, Sleep Apnoea, Hypothyroidism, Lyme Disease, Lupus, Fibromyalgia, Depression, the Flu, or something else entirely!
In an ideal world a doctor would come up with a list of everything it could be and then rule each one out with tests. But it isn’t an ideal world, and doctors are often constrained by time, budgets or equipment. Their personal prejudices may come into play. If someone who is slim presented those symptoms, they may take an entirely different approach to someone who is overweight. Many of my grandads’ ailments have been dismissed with ‘it’s your age, it happens to everyone’ and similarly doctors point at my weight as the problem – rather than seeing someone who has put on weight from being unable to exercise and comfort eating due to pain.
If perhaps I’d been listening to when I was ten years old and complained my limbs hurt, and my knees and ankles kept giving way, they would have discovered I was hypermobile, and given me the correct treatment to strengthen my joints. Then it may have been I wouldn’t have developed chronic pain and Fibromyalgia. Or perhaps I was destined for Fibromyalgia no matter how many stretches I had done as a child. I don’t know.
It took me until the age of 23 until I finally saw a Consultant Rheumatologist who spent time thoroughly looking at my history and symptoms to diagnose me with Ehlers-Danlos Syndrome, Fibromyalgia, Myofascial Pain and Postural Orthostatic Tachycardia Syndrome.
I have seen so many other consultants who were dismissive, or shrugged their shoulders. One doctor even said I was Hypermobile, and then a year later forgot he had done so and declared I was fine without reading my history.
Finally, I’d like to point out that many people in England do not realise that they have the right to be seen at any NHS hospital in the country. You do not have to go to the nearest, or the one your GP decides to send you to. If you hear of department in a specific hospital that seems to do a better job than your own – you can choose to go there. You cannot demand you see a specific doctor, however, but you may request to do so. I’ve often found I can see the doctor I’d like by simply waiting longer.
Please keep fighting for your diagnosis if you think something is wrong. Don’t give up.
