by The Chronic Chronicles | Aug 1, 2011 | Coping Methods, Daily Life, Fundraising, Volunteering
Credit to Puiu Adriana Mirabela
Today I went to a Chronic Pain support group. I love going, it’s quite a great feeling being in a room full of people who know exactly what you’re going through. Sadly it usually clashes with a work day, so I’m not able to go. We spend the time just talking about our current issues – sharing things that have worked for us, having a bit of a vent and quite often having a laugh at ourselves.
Speaking of work, things came to a head when I went to see my GP recently and explained how low and stressed I was feeling. She then said she wanted me to have a break from work, and signed me off for a month. She also referred me back to the chronic pain clinic at the local hospital to see if they can try something new, and decided to put me on Prozac, to see if I can kick this depression.
Work took it in their usual way. I have an occupational health assessment tomorrow, which they asked me to have when I joined the company. I’m quite nervous about it, but will see how it goes.
I’ve been trying to think of something new to do a fundraising event for Fair Access to Colchester. The group has no money, and I desperately want to advertise and do lots of other things that cost money. I’ve run some pamper days for a village hall charity before, and I wanted to do something different.
At the same time, I was trying to arrange a craft themed meeting for Fair Access. I have found lots of disabled people are into crafts, and that’s how I got into them myself really – by looking for a hobby that could distract me from the pain. I suddenly realised the craft theme could work on a larger scale – by getting a large hall, and having lots of different crafters in giving small lessons. For example someone would come in a pay a small fee to make a bracelet, or a card, or paint something. That way people get to do something fun and try out something they may not have done before. It’s expensive starting a new hobby, and you want to make sure you’ll like it before you spend money.
I thought I could have some tables selling crafts, some children’s stuff and maybe a raffle or something.
by The Chronic Chronicles | Jul 25, 2011 | Daily Life, Trips Out
Cover of Ghost (Special Collector’s Edition)
I have a hospital appointment in London in September, so while we’re there my Mum and I decided we should do something nice and go and see Ghost the Musical which has just opened.
I phoned the accessibility line for the Picadilly Theatre as I need a space to put my wheelchair in, and they were very friendly and helpful. They’ve booked me an end-row seat, someone to store my wheelchair during the show and my mum as my carer gets in free! They also advised me of the best place to get in for level access, and the nearest parking. Shockingly (or not so, if you’ve ever used an NCP car park!) they charge more for the parking than my ticket will cost! So let’s hope we can find some parking elsewhere.
I am looking forward to it already!
by The Chronic Chronicles | Jul 18, 2011 | Daily Life, Employment/Work, Vents
I am really struggling at the moment.
The pain is unrelenting. I did something to a tendon in my foot which was agonising, and I couldn’t walk for days. It took ages to heal, and the instant it did I pulled a muscle in my chest/shoulder. I couldn’t breathe without terrible pain, and if I moved it was crippling.
It finally healed, and my lower back started. My lower back always hurts – it hasn’t stopped since I was fifteen. This is worse, so much worse.
I am also completely, and utterly exhausted. Bone-deep fatigue. My eyes are closing against my will, and I can’t summon the energy to do anything. I’ve been going to bed around 7-8pm and sleeping through until late morning, and struggling to get out of bed.
I am currently at work, trying to cling on, too scared to take sickness as I’ve already had one sick day since I’ve been here, and three days annual leave.
Please let this day end.
Fatigue – Nakhon Sawan, Thailand (Photo credit: Wikipedia)
by The Chronic Chronicles | Jul 15, 2011 | Daily Life
Karen Lee Richards has written the top then things never to say to someone with Fibromyalgia here. Her list, my thoughts. She has more at the link.
10. We all get more aches and pains as we get older.
My pain started when I was about 10, and hasn’t stopped since I was 15. I’m not old. It’s so much more than aches and pains. An old lady shivered the other day and said she felt the cold. I agreed I did too. She glared telling me to wait until I was older. Right.
9. I think I have that, too – I’m always tired.
It’s not just tiredness. It’s crippling fatigue. I’m lucky in that generally I have a lot more of the pain than the fatigue, and I do take a lot of steps to try and pace myself. The second I don’t – I’m screwed up for days. It’s bone aching exhaustion and there’s nothing you can do about it.
8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.
I am currently working three days a week. I work a day, have a day off. I’m off sick a lot, and am struggling my arse off to carry on, because I just can’t afford not to work. It doesn’t mean I’m not bad, I just feel at the moment, I don’t really have a choice.
7. My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnosis.
Utter rubbish. Sadly a lot of doctors don’t keep up with the research, and still see it as ‘I don’t what else you’ve got so I’ll say you have fibro.’ There is lots of evidence it exists. At consultant at the local hospital said I had it, but refused to officially diagnose me as it was too “American.” If by that he means they take it a bit more seriously, then sure. But the illness is real and debilitating as any other, and has no nationality.
6. If you got more sleep, you’d feel better.
I do sleep. I can sleep up to 16 hours sometimes, but other times struggle to sleep four. But no matter how many hours I wake up exhausted, because people with Fibromyalgia do not reach the ‘deep sleep’ stage, the restorative and healing stage. So the problem is our sleep has no quality to it, it doesn’t really matter how much you get.
5. I read about this new product that cures fibromyalgia.
Yeah? How much does it cost? It’s amazing how many new products come out that totally cure x y and x, but whoops, it costs £1000+. I’ve heard so, so many therapists tell me they can cure me and then not make the slightest bit of difference. If a product genuinely works, I find most people want it to reach as many people as possible at a cost they can afford. Generally.
4. At least it’s not fatal.
But it has changed my life. It took away my ability to walk, to fully enjoy socialising, to work how I wish. Sometimes during my worst days I do wish it was fatal because it’s hard not to when you’re constantly exhausted and in agonising pain. I believe conditions like this should be taken just as seriously as fatal ones, because they truly impact every facet of your life and if it was taken seriously hopefully more resources could be put into research.
2. But you don’t look sick.
That’s because you don’t see me when I wake up almost screaming in pain because some joint is out of place. You can’t see pain visually, but you can if you pay attention.
1. It’s all in your head.
Yeah, something probably has gone wrong in our head like our brain is recognising pain signals far too much, but it’s totally and utterly real.
Common signs and symptoms of fibromyalgia.(Photo credit: Wikipedia)
by The Chronic Chronicles | Jul 10, 2011 | Daily Life
Last weekend I went to Colchester Zoo for a Sensory Day with some members of Fair Access to Colchester.
I tried to get a scooter from Shopmobility for the day – they usually have a Paris Shoprider that easily breaks apart to go in a car, which I’ve taken on holiday numerous times. Sadly, someone had taken it out for sixteen(!) weeks and they only had one.
Option two was an electric wheelchair they found in the corner of the storeroom. It hadn’t been used in some time, and didn’t fold up. They charged it up and we went to collect it. We put the seats of the car down, and three people lifted it in with some difficulty. The massive battery underneath made it incredibly heavy and it didn’t disconnect.
Uh oh! How were we going to get it out? Luckily my mum, with help from two other people managed to get it out, and we were off.
The chair was the size of a normal wheelchair – not those massive things you see, and the battery tucked underneath nicely. It went at a decent speed, and was easy to control.
The zoo is incredibly hilly, although they have a yellow line going round that follows the most mobility-friendly path but it was still pretty tough going. It was fantastic. I could choose where I wanted to go. I could keep up with everyone, and no one was exhausted pushing me. Unlike a scooter, I could go right up to things, and manoeuvre myself to see what I wanted.
There were a few hairy moments on steep hills where it didn’t respond to my controls, and someone had to grab the chair before a bowled over an entire family!
Then the battery started draining. It started on five, and seemed to dip down with increasing speed. But we hadn’t reached the elephants – basically what we’d come to see! Determined to make it, we rushed on, skipping the smaller attractions.
An African elephant at Colchester Zoo (Photo credit: Wikipedia)
We made it just as the battery died completely at the furthest point of the zoo. The zoo had an elephant feeding for what they deemed as “registered disabled” people only (although there is no such thing as registered disabled anymore.) We then crowded round the chair to try and find the switch to make it manual, but realised with horror there wasn’t one. It was a dead weight, the wheels totally locked, and weighing a ton.
Finding a zookeeper, we told him off our plight. He radioed the office and asked someone to bring a manual wheelchair, and send help for the other chair. Four zookeepers joined us, and three of them picked up this heavy chair to walk it all the way across the zoo to put it in our car. My mum went with them to direct them, and they then found out our location and drove her back to us. They were total stars and saved the day.
The manual chair was fine for the flat bits, but they were few and far between. My guilt wouldn’t let me ask others to push me up hills, so I had to keep getting out which meant I reached my limit extremely quickly, my back went into spasm and I was totally exhausted. Everyone took it in turns to push me on the flat sections and were so helpful.
So massive thumbs up to Colchester Zoo for rescuing me, although please don’t try and attempt it with a manual chair!! We sent a letter of thanks to the men that carried the chair back to the other, and the one that brought the manual and pushed me for a little while to reach the others who’d continued to the next section.
Colchester Zoo have regular Sensory/Disability Open Days which include BSL Demonstrations, feeding sessions for people with disabilities only, and more.
Their events page shows when they will next be having an open day.
by The Chronic Chronicles | Jul 9, 2011 | Daily Life
I should have got a mobility aid a lot sooner than I did. I couldn’t possibly have one, I thought – I’m much too young. One day I went out on a family outing and they decided to go for a long walk. Oh no, I thought. I tried desperately to keep up – my lovely mum trying to hold me upright as the pain increased. I was hobbling along, having to sit on every bench going. The car was now long behind, so I was stuck. I think that was the day my grandad saw how bad I was getting, when he, then in his late 80s could easily out walk me. When we got back he took me straight into a shop to buy my first mobility stick. The choice was an old fashioned floral pattern, or copper. I picked the copper one, but it wasn’t really me.
The stick made a difference – when I reached my saturation point of pain it helped to lean on, and when I was dizzy (quite often) and clumsy (very often) it helped to keep me on my feet.
I then stumbled across a website called Glamsticks where there were rows and rows of beautiful handcrafted sticks. They started from about £20 for a light-weight handpainted one, and went up to about £55 for fully-covered diamante, glitter and more! My first stick I picked was a multicoloured diamante folding walking stick. It was bright, cheerful and didn’t scream disabled. I got stopped constantly to compliment it.
But fickle me wanted more! My next stick was my own design (well, with a lot of help from the lovely owner of Glamsticks!) It was sprayed a pinky-gold, with butterflies and fairies outlined in pink gemstones and glitter. It’s incredibly girly and ever-so-pretty.
But two sticks just isn’t enough! My winter coat was purple, and I needed something to match it. So my next stick was silver with prple swirls all over it. Lovely!
So that gives me three, but which do I pick in summer when I wear a lot of white and blue? I’m saving up for my fourth and probably final stick, which I’d like in shades of ocean blues.
Walking sticks don’t have to be NHS grey any more, but can be fashion statements in their own right. I want a stick that says something about me, and glitter and gemstones are perfect.
Perhaps four aren’t enough. What about one for every day of the week? Well, I’ll give it a go!
by The Chronic Chronicles | Jul 8, 2011 | Daily Life
It took me some time to consider using a wheelchair. It didn’t occur to me that I was just as entitled to use those chairs at the front of the shop, as anyone else who needed to. I instead hobbled around, my pain levels ever increasing – until I collapsed back in the car, in agony and exhausted. I decided to give one a go in Asda, when I was with my mum. We whizzed about, and it was amazing! I could spend time looking at what I wanted, with no pain clock ticking over me. I picked which shops I went into based on whether they had a wheelchair available for use.
It isn’t always easy using a wheelchair though. For start, if you are unable to push yourself like I am, you have to give all of your independence over to the person pushing you. It’s hard to explain what this is like as a 23 year old that has been making her own decisions for years. They have the power to decide where you go, which way, what you will do. It’s a very difficult thing to get used to and you have to give all your trust over them.
It’s also an exhausting job for the person pushing you. It’s one thing in to push the chair in the shop, where there is a shiny flat floor. Outdoors there are hills, pot holes, curbs and people and so I feel an enormous sense of guilt over it.
General inaccessibility is another big concern. Many shops, particular older ones, have narrow doors or steps to get up to them. Shops put advertising boards and other objects out on the pavement, so it’s a struggle to get around it. There is a lack of dropped curbs, and many aren’t flush with the road, so it’s a case of whacking against them and hoping for the best. You have to remember they aren’t like prams that you can tilt back – they’re solid and difficult to turn.
Shops love to have large displays you can’t get around, or terrible layouts that require impossibly tight turns. Other shops have fixed chip and pin machines, so you can’t pay for your own items. Many places do not have lifts, and won’t offer service to you if you can’t reach them (despite it being against the law). I’ve been turned away from the dentist I have used all my life, as he refused to treat me in the (available!) downstairs room when I could no longer manage the stairs.
Then I discovered mobility scooters, by joining Shopmobility which gave me access to mobility scooters for a small fee. Suddenly the town centre opened up to me again. I used them to do my Christmas shopping, to meet friends and to go to appointments. I will admit I find them embarrassing to use – people associate them with older people, and particularly because I’m overweight – I worry people think I’m just lazy. Jokes about them on shows like Benidorm, where they call them ‘Crip Mobiles’ and encourage able-bodied people to use them don’t help.
The great points about them were that I no longer had to exhaust someone by pushing me; had somewhere to put my shopping; I could decide where I wanted to go, and cover longer distances. The downsides were the greater size meant even more shops became impossible to get into. We even rented one to take on holiday, that broke up into pieces to fit in the car. It was fantastic, as long as I have someone there to get it in and out the car and set it up. I even explored some caves, using one. The biggest downside is their cost – completely out of my league.
A scooter outside a shop (Photo credit: Wikipedia)
I have also had some horrible experiences using one. Before Christmas I rented one to do my Christmas shopping. It was the first time I had been alone using one and I hadn’t realised how much I had been relying on the other person. I found doors that opened outwards, so I had to sit and wait in the freezing snow for someone kind enough to open it for me. I got stuck in shop displays, and people stepped out in front of me, even on the lowest speed possible and me calling out to them. It was like I was invisible. As my shopping piled up in the basket, I could no longer leave the scooter outside while I went in shops, as I couldn’t carry it all.
I went into WH Smith. First of all I couldn’t get to the part of the shop I wanted to due to the layout of the displays. A customer kindly fetched the item for me. I then attempted to queue, but the layout of the tills was so awful and tight, I banged into the barrier, and all of my shopping fell off – breaking some items. I hobbled off and tried to pick it all up, when it happened again. I was exhausted and tired, but had already entered the queuing system so I couldn’t back out again. Someone stepped over me while I was trying to pick my items up to queue in front of me like I wasn’t even there.
A customer saw my difficulty and pointed it out to three members of staff, who ignored me. In order to manoeuvre round the barriers, I had to crash multiple times into their displays, causing everyone to look at me and probably mumble about scooter drivers being a danger to society. But there was no other choice in order to get out, as it was too tight.
I finally reached the till, and a member of staff walked over and said, “Can I help?” I wanted to throw my broken items at her, but didn’t want to spend Christmas in prison for assault.
I wrote a letter to WH Smith in December detailing the issues, and suggested that due to their till layout, they have a till right at the end for wheelchair and scooter uses, as well as anyone with another disability that would find it difficult to use the queuing system.
They didn’t bother to acknowledge my letter, until the local access group got involved for me. I found them such a help I then joined, and became a committee member. They agreed to make changes, but sadly at this date this haven’t done so.
I now have my own manual wheelchair from the NHS, which is great, but I still long for the day I can get an electric wheelchair and have some independence.
by The Chronic Chronicles | Jul 4, 2011 | Daily Life, Opinion, Vents
One thing that really frustrates me is that whenever I try and help myself, I find myself banging my head against a brick wall. Just some examples:
If I want a simple referral to a consultant, I seem to have to jump (well, stumble!) though a million hoops first.
I have been waiting over 18 months – not even counting the waiting list for Social Services first – for a disabled bay to be put in, and it’s still not done.
I was given a wheelchair on the NHS that didn’t fold, so I couldn’t really use it properly as it was such a nightmare to get in and out the car.
I have been turned down for Disability Living Allowances twice at Tribunal level, despite lots of medical evidence. (This will be detailed in another post, as I have lots to say about that!)
The council ‘band’ people in categories in order to be eligible for housing. I have been put in a crap band that means I’ll never be able to move , even after an appeal twice now, and have called my medical conditions minor.
I try my best to work, even though it almost kills me to do so, and it’s the reason why some people don’t think I’m as bad as I am.
Okay, just feeling a bit frustrated at the moment!
Credit to ralaenin
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.
