Yesterday I received a letter from the Disability & Carer Service after I applied to them for DLA due to my Joint Hypermobility.
I can tell you all, I was SHOCKED at how fast their desicion was. As you can probably tell it was a NO!. They say it was due to what I said, because I don’t need a lot of help and as of when I claimed I could walk 70 yards. Well, I contacted them and told them I had worsened in pain, but bets are they had already made their minds up. They state they talked to my GP. Ummmmm, for having written the letter on the 27 April 2011 and I applied on the 12 April 2011, I highly doubt that as possible, especially with the amount of bank holidays we have had etc…
Well, I have got my letter of appeal written and sent, so lets see what happens now. I really like how the Government award people who lie out of their asses to get extra cash but dont take the TRUE and GENUINE disability into consideration. I am only getting £130 a fortnight for Jobseekers Allowance and well, how am I meant to live off that, buy anything I need such as brace for my back arms and ankles etc., extra aids for around the house and anything I can have in the car when I am travelling on a long journey? I can’t, it can’t be done, especially in this market.
So basically what I am saying is if you are an addict or foreign you get everything, but if you are normal and have a disability in this country you get fuck all!.
I will keep you all updated on my appeal.
Raising Awareness of Joint Hypermobility Syndrome
Dear Sir/Madam,
I am writing to you to ask for your help in raising awareness of a pain condition.
I suffer from Joint Hypermobility Syndrome, this is a pain condition that affects the joints and is also known as being Double Jointed. I have this in my knees, elbows and wrists. One day I can be in constant pain, and the next day I can be fine. Myself and other sufferers of this condition cannot plan ahead as we do not know what we will be like on that day.
I live in Fife at the moment and I feel that I have been left out by NHS Fife due to GP’s not knowing about the condition and having to wait months for referrals to Physiotherapy and Rheumatology. Last year I seen my physiotherapist but due to my pain not being too bad I wasn’t referred to Rheumatology, however, months afterwards the pain got worse and gradually became more constant, my GP then referred me to Rheumatology through the physiotherapists diagnosis. I didn’t receive any correspondence from the Victoria Hospital, Kirkcaldy regarding my appointment, so in January, nearly a year after my GP referral, I visited my GP to get things sorted, I was shocked to learn that they would not see me due to my referral not being from my physiotherapist.
After this I was very disappointed that NHS Fife had basically left me in the lurch and not knowing what was happening. I thought it was their duty to inform patients of any matters that arose with referrals; I was obviously shocked at how this has been handled. So I had to have a referral to my physiotherapist again to have my referral to rheumatology put through. For a year I have basically been put through hell, stress and a lot of anxiety (to which I already suffer from along with Panic Disorder, Health Anxiety and Death Phobia). I was recently in contact with a sufferer in Aberdeenshire who says she has basically gone through the same treatment as myself and other sufferers in Fife, being left after appointments etc. and as I am moving to Aberdeen, I am scared of the outcome to which may happen up there as I will be living away from my parents.
*One study on patients with “joint hypermobility syndrome”, a disorder similar if not identical to EDS III, showed that 78% had signs of dysautonomia, such as orthostatic hypotension, postural orthostatic tachycardia syndrome and uncategorized orthostatic intolerance (Gazit, Nahir, Grahame, & Jacob, 2003). These patients also had evidence of a-adrenergic and B-adrenergic hyper responsiveness.
I, along with my HMS Fife Group leader have started a petition to ask NHS Fife and NHS Grampian to give more help and information to HMS Sufferers as we cannot cope with what is being done to us; you can find my petition by clicking the following link: http://www.gopetition.com/petition/44197.html.
Also, a dear friend of mine who also suffers from Joint Hypermobilty and Fibromyalgia etc., emailed Professor Mathias, who is based in London about her condition, she talked about how she felt her conditions were not looked at properly and was feeling let down. She described her symptoms to him, which he promptly replied to, however, he stated that without seeing her, he could not give any comments on a diagnosis. My friend was asking if she could see him privately in London, but due to the pain and comorbities that HMS can cause, she is unable to travel. I would like to state that she has given permission to be interviewed, if need be, at her home.
HMS Sufferers and myself are hoping that coverage (be it reports, interviews etc.) from yourselves can help both NHS Fife and Grampian do more for us and to raise the awareness of the condition more.
If you are in need of any other information, please do not hesitate to email me and I will pass on as much as I can to you.
Kind Regards
Pamela Anne Carpenter
On behalf of HMS Sufferers in Fife & Grampian
*Taken from http://www.dinet.org/what_causes_pots.htm
Well, this past week I have been trying to gather some special things to Raffle off to raise money for HMSA (Hypermobility Syndrome Assosiation).
I emailed the SFA if they could donate anything and to my horror they only support two charities. They wouldn’t even take time out to help a charity who are really in need of funds, instead they help one of thier own and Alzheimers Society (which everyone has heard of), no one I know has heard of HMSA due to the fact Joint Hypermobility is an unknown condition.
I am awaiting to hear from a fedw other clubs, and I am pleased to say that a few celebs that one of my friends knows are all willing to contribute.
However, to get a great deal of funds raised for HMSA, I need to get decent donations. If anyone has any ideas on who to ask please email me on PamieAFC1903@gmail.com.
Well I am going to stop typing this fast at the moment as hands and fingers are starting to hurt, the downside to having Joint Hypermobility :(.
I hope many of you can help me and the HMS Fife Group raise a good amount of funds to keep the HMSA going for us sufferers.
Pamie
x
Well, the past few days I have been trying to cope with some low mood and pain.
Last week, mainly Thursday and Friday, I was feeling my lowest since my Granda Charlie’s passing. I think the adrenaline of all good that happened had worn off as I was beginning to feel that nothing was moving forward again. I am still waiting to hear from Melanie from Arthritis Care about volunteering, it seems she isn’t getting my emails, I may email her from my gmail account to see if she receives it.
My knee and elbow pain has been increasingly annoying of late. Not so much sore, but more annoying, the pain hasn’t been throbbing or anything else, just well, there when it shouldn’t be. Swelling in my knees hasn’t been much, but my left elbow has been somewhat swollen the past two days.
On Saturday, I ended up missing the St Mirren v Aberdeen match in Paisley due to the road conditions, I think after having two scares on the M8, my mood has been low because of the near experiences I had that day, but I am glad we managed to turn around and come home. Heading to the replay at Pittodrie on Wednesday.
I have, however, got one appointment to look forward to, on Thursday I will be heading to Aberdeen once again to visit the Grampian Hospital Radio at Ashgrove House which is at the Aberdeen Royal Infirmary. I filled out the application form and posted it today, I hope I get somewhere with this as it would be great for me and my experience I want to gain to help my career in Journalism.
I am hoping that my mood can at least improve by then. I want to make a really good impression at Ashgrove House and show them I want to have a career in Broadcast Journalism. Portfolio is ready and well, I don’t know if I should email Kingdom FM to see if they still have the bulletin I recorded, I doubt they will, but I suppose it is worth an ask.
Well, I shall leave you all now to take a moment on my words tonight. I shall let you all know how my visit to Ashgrove House went.
Pamie
x
As a non driver in the UK you would think I wouldn’t give a rats about the petrol prices. But you are wrong, I do.
My parents and older brother both run cars and I rely on them to get me from A to B. At the moment before the budget, I was hardly able to go out due to the rising costs of Petrol Prices. Although my mum is in a full time job, my dad however is in receipt of benefits, as am I and my older brother is a full time student at College. The thing is, when all the bills are paid and food bought for the house, my parents aren’t really left with a lot of spare cash. My dad is also still paying for his car, and obviously his car insurance, my brother pays for his, his digs and well he needs to eat at college so he is also paying for that.
At most before the hike, it took £50 to fill my brothers Honda Civic Sport, now we reckon it will be nearer £100. My dads car took about £40 to fill up (being smaller than my brothers) and will now be nearer to £90. I stress this is per month.
For someone who is on benefits, like my dad and myself, this would be crippling for us. I only get £130.90 per fortnight and well, with bills and digs etc. this doesn’t last me long, so I end up having to rely on my mum and dad, to which I hate doing. I would rather just jump on a bus and go places, but due to petrol and diesel prices being so high, Public Transport have increased their fares. I know we all have to make sacrifices, but as a young adult at the age of 26, I don’t see why I should have to put my life on hold because our Government (old and new) can’t do things properly.
I read in The Sun newspaper that it would be a saving of £3, to whatever cost £3 is a lot to us on benefits, not to those who ern £30,000 a year etc, and I for one am happy they they are tackling the fuel tax and prices, this is a major concern to the whole of the UK, with out fuel we would be stuck, I see so many people complaining, about the 1p drop, but I don’t see the problem, it has come down, it is a start, we can’t exactly just drop 20p off it, because that would mean a lot of losses, in both money and Jobs, you need to think of employment as well as your own status. Without petrol station attendants, where would you be, stuck paying with a debit/credit card, to which not everyone has. Many petrol stations has to abide by the rules, but private ones seem to get away with charging higher prices as they set them themselves, this should be made against the law unless you have a specific reason to keep your prices high, one reason being that you already bought the fuel at a higher price and would not like to make a loss on what you purchased. However, seeing the state of some petrol stations actions is appalling.
Many stations upped their prices by 6p, so the 1p drop would mean they are still in pocket, I say name, shame and boycott these stations for not playing by the rules. So far only ASDA and Morrisons have abided by the rules and taken their prices DOWN without raising them. I say give ASDA and Morrisons the business they deserve for NOT misleading and bankrupting the public.
I for one have told both my mum and dad and my older brother to use Morrisons petrol as you will get MORE from it.
I am also going to stress that rising prices of fuel means rising prices on learner drivers, many of us pay out of our own pocket, not our parents, there will be less and less motorists unless this mess is sorted out.
Well, I hope you have enjoyed reading, and comment for debates is open, but please, be nice.
Pamie
x
Well, after careful consideration with my HMS Group leader Moira, we decided more needs to be done for us HMS sufferers in Fife.
We are going to press, TV, radio and well anyone I can think of to try and raise the awareness of HMS. There is a centre in Glasgow which specialises in HMS, but none of our doctors will refer us to it. We all feel that we are being pushed from pillar to post and not getting the service we deserve.
HMS is a chronic pain condition and one day we can be fine the next we are in constant pain. Many sufferers need aids to walk, painkillers and other medication, I am on 2 different medication for my HMS and I can assure you, I have only managed to get it with constant bugging of my GP. Anyways, one of the reason I am being involved in this is because I am myself being dumped here there and anywhere by NHS Fife.
Last year I was finally diagnosed with HMS and because I wasn’t in too much pain, my physio didn’t refer me to rhumatology to get checked, but since then my pain worsened, so I went to see my GP and she referred me. I waited nearly a year before I chased it up, mainly because the pain was managable, but gradually getting worse, by January 2011, I as getting fed up of waiting, so I seen my GP and found out the they wouldn’t see me because I wasn’t referred by the physio. I was disgusted at how this was handled, I wasn’t informed of anything by my surgery OR the Victoria Hospital, I feel the NHS has failed me on this part, here I am in genuine pain and I cannot see anyone to get the proper treatment. How many more of us are going through this?
So what I did was set up a online petition, and a paper petition for the HMS Fife Group to get more help in our area. I made the petition on Saturday 26th March and so far have collected 38 signatures. I am hoping this will rise. If you would like to help us sufferers get the treatment, information and appointments available to us then please sign it. The link is: http://www.gopetition.com/petition/44197.html.
If you do sign it, please comment on why you are signing the petition and thank you very much from the HMS Fife Group.
Months of dealing with Joint Hypermonility Syndrome has taken its toll on me. Especially more now when if someone see’s my arms all I hear is “eeeew” or “oh my god that’s freaky”… I’m just waiting for the “Here come’s the freak show” line.
This is classed a bullying, this is what I have had to deal with for 20 years of my life, well no more I am making a stand!
Joint Hypermobility isn’t something to laugh at or even poke fun of. Days I wonder if I will still be walking next year or if I will be in a wheelchair. What the next day is going to bring me is a worry I deal with all the time, will I be sore?, can I go out tomorrow?, can I clean my room?, these are some questions I always ask myself before I go to sleep, because it is true, can I do what I have planned. I can’t make full plans until I know on the day what I am going to be like, and well, I have lost friends through this because they have no idea. One person even called me a liar, but I swear the day she becomes a Rheumatologist and tells me that I will listen, but my Physiotherapist has diagnosed it so she can go to hell! (the accuser not my Physiotherapist).
Well, I have just had a good cry and blurted a lot out to my friends on AR, they are great and I know they are trying to help me etc., still feel lousy though.
I have to call my Physiotherapist again on the 11th April to arrange an appointment with her, but I may ask her if I can be referred to NHS Grampian, may have to give a different address but if it’s going to take ages I may as well ask.
Well, I’m going to head aff now wrists are slightly sore :(. So is my left elbow to be honest. So chow for now guys.
Pamie
x
Here, I am going to talk about how I was bullied through Primary School, High School, One time at College, my work and most recently online.
I have had a tough life, I was an outcast in school, mainly because none of my family were from Fife, everyone was like family because they were from the area. But I wasn’t. I had friends who stood by me up until the age of 12, when it was revealed I was diagnosed with depression. They must have all thought I was mad because of my age etc. I felt so low and shut out, I stayed in my bedroom. Anyways on to the bullying.
Everything was fine until my older brother Michael left for High School, that’s when it started each day I was tormented by a boy 1 year above me. and it went on and on and on. I told my mum, who then told the school, but nothing was done, until my teacher in P5 got involved. Because people in my class seen I was an easy target one girl then started, she hid my pencils, forced me to write in colouring pencil, and it wasn’t her getting the row it was me, it wasn’t until one parent’s night my mum spoke to my teacher and she called me in and I literally just cried and cried because of it. My teacher who I really liked that year was so involved with helping me so much, but then came P6. And it started again, this time because my teacher didn’t think I was being bullied, and yet SHE was bullying me also, because of this I didn’t want to speak to her or anything, she called me thick in front of my friends, this really hurt me, told my mum, but because my teacher was a trusted teacher it was dismissed, even by the Education Board in Fife Council. So then on I admit I skipped school because of this teacher and the bullying, but no one really knew how it was affecting me. I had already lost my best friend Lee in 1992 who was involved in an accident in School. I didn’t want to lose anything else, but the way things were going, it was heading that way, this continued into P7 class.
I have to admit the bullying in High School was low and was only committed by the same person that started it when my brother left. This was because my brother was almost leaving High School when I started. At this point in my life other things was happening to me (body changes etc). And this continued throughout High School, I was put into an Adolescent Unit, where I was bullied there. Then moved onto a Support Unit where things got better. Came to exam’s the unit I was in asked if I could sit my English, Geography and History exams, but my School said no because of attendance, again, I felt the school was punishing me because of this. My parents even said the School was bullying me.
In 2008/09 year of college I was bullied because of my anxiety. The others in my class were younger than me, I was the oldest, and because they knew I suffered from this they took it upon themselves to call me names like junkie, loser, lier (they thought I was milking it all). The bullying was stopped for a while but then it started again, so to stop it once and for all I decided to switch campuses and then the bullying stopped. I have to say my College stopped this more than any other educational place in my life.
In September 2009, I applied fro a job at Subway and was successful. I loved my job, met some good people, but there was one who thought it was funny to make fun of how I react with my anxiety. Myself however didn’t think it was funny and neither did another member of staff. Both of us reported this to our manager who reported it to HR, and guess whatnothing was done, the girl was still able to pick on me non stop, it got so bad that I called in sick because I didn’t want to work with her. She then made a comment about me being off due to my anxiety whilst my mum was still on the phone to her. this was noted by myself and another colleague. Again HR did nothing, this girl has had so many times that she could have been warned or sacked. Because of this girl another member was sacked because of her attitude towards her, but it was her causing the attitude. It wasn’t until last month I wrote to the Managing Director of Subway to voice my concerns and complaint. as the HR manager also bullied me because of my ADHD and a status I made onFacebook. She said that by looking at a PICTURE yes a picture, I was drunk…. only thing is one drink and my ADHD is set off, she wouldn’t hear it though, she then went onto a status I made which she took to me meaning I was drunk, as I had said I was pissed, however I meant I was pissed with someone….. This is someone who doesn’t know whatADHD is and or how it affects people. People like this should be warned of any effects things can have on conditions. But she was adamant I was drunk and took the day off because of this. When in fact I had a migraine which I have suffered from since I was young and was NOTED in my medical (as was my ADHD and Anxiety). I hope that with my letter this company can stamp out bullying in the workplace.
Just tonight I was cyber bullied by someone I thought I could trust. Just because I moaned in a status about putting details on my Facebook which I shouldn’t because of my chosen career path. She made up a horrible lie, about something I was supposed to have done on a website we were members of. Now my mum has emailed the owner to see if there is any truth to this, but I can assure you there isn’t as the content that was supposed to have been uploaded was a automatic banning,. and I was never banned until now when I voiced my opinions (weird). So I thought no, I am not letting her get away with this, I reported her to facebook and I kind of hope people who are on my friends list will follow suit, in fact I hope ANYONE who is being bullied via any social network contacts the owners and reports the person.
Anyway, I am going to move on now as my fingers are starting to hurt from my typing, but I am glad you have taken the time to read my story on Bullying & Me.
In this blog, I am going to talk about my time of having Hypermobility Syndrome and Arthritis.
I have had arthritis since I was 9 years old in my right collar bone after fracturing it. The pain in it is mild and doesn’t really bother me unless I do a lot of writing, or exercise.
Last year I was diagnosed with Hypermobility Syndrome, this was after I was complaining of pain in the areas where I am double jointed. I was told when I was younger that I was double jointed, but after a visit to the physiotherapist last year she informed me I was in fact suffering from Hypermobility Syndrome (known as HMS), a far diagnosis from the Carpal Tunnel Syndrome my GP diagnosed.
So, I was given some ultrasound therapy on the most painful area, at that point my left elbow due to a fall in December 2009, but since that day, the pain in my elbow has increased also the pain in my knees has increased also. I went to see my GP again who referred me to Rheumatology, unfortunately they refused me as I wasn’t referred by the physio. It took me a year, yes a year to find out about the refusal, to which I was very disappointed and angry that I wasn’t told by NHS Fife myself.
At the moment, I am currently taking strong paracetamol that you buy in stores as most strong pain killers either give me bad side effects or interact with other medication I am taking. I also suffer from anxiety, and as the pain is mostly on my left side it doesn’t help my anxiety a lot, so I take quite a few anxiety attacks when the pain is very bad.
So now I am waiting to see the physiotherapist again, I am moving to Aberdeen in August to attend Aberdeen College. I am hoping that my pain is manageable for when I start as I will be living away from home.
However, I do recommend that anyone suffering with any type of pain to see their GP, it could be a strain that could lead to arthritis. Also if you have been told you are double jointed ask about Hypermobility Syndrome as like me, you may develop it later in life, or actually have it, but due to the amount of exercise you do, your pain may be manageable.
Well, I shall sign off now and I will blog again next week and update you all on any information I may have.
Pamela-Anne
x
I had a wee sneek peek at the SFL highlights and was disgusted at how our National Stadium’s pitch looked.
It is our NATIONAL stadium, it should be kept in top condition. Wembley and The Millennium Stadium are both kept in good nick so why isnt Scotland’s home?
No doubt it will be down to money and lack of funds. To be honest if the SFA took more time looking after things than arguing with Neil Lennon and Celtic FC our home would look immaculate. Am I wrong?
I may be, but look at it this way. What has happened since the whole fiasco with Celtic came about, hardly anything, Scottish football is being ruined by it all. Celtic and the SFA need to bury their difference’s and concentrate on what they are being paid to do, keep Scottish Football alive.
The way to kill football is NOT looking after your stadiums, particularly your National Home Ground. Hampden Park deserves more than this, It’s Scotlands 5* Stadium, or it should be, more like 2* at that match.
C’mon SFA, get your finger out and get our National Stadium back to a 5* ground!.