by Jeanne Hambleton ©
NFA Leader Against Pain-Advocate
This story began on this weblog. I received an email from a lady, severely disabled with fibromyagia, who called herself Sez. She responded to my plea to sign the e-petition seeking more funding from the government for fibromyalgia.
From her comments and the effort it took for her to write to me, there is no doubt she felt passionate about the lack of support from the ‘corridors of powers’.
She wrote, “Hiya, I have fibromyalgia .. I am 35 nearly 36 and I can hardly do a thing for myself… I will sign if you tell me how to…Take care Sez “.
From there our email friendship blossomed. She signed the e-petition and said, “As for being on the Internet a lot, today is my first day so I am sure I will spend as much time as I can on it from now on…”
Like a child with a new toy she was hungry for more information about this rotten syndrome, which will last us our lifetime, and I had plenty of links to give her.
In the following days I had news of her late husband, her Mum and Dad, her lovely 13-year-old daughter, and her pain – such bad pain.
But last week for brief while, the pain disappeared as Sez was full of pride. She was standing “10 feet tall” at the Holiday Inn, Luton, waiting for her devoted daughter to receive a beautiful glass trophy for winning the Carer of the Year award.
This was a moment she had never anticipated, but before X Factor star Beverley from Luton, and a number of dignitaries including the Mayors from Luton, Dacorum and St. Albans and VIPs from the County Council, Becca (Rebecca) was chosen as the Carer of the Year in The Chiltern Radio Pride of Herts, Beds and Bucks Awards sponsored by My Chiltern Radio. Becca had been nominated by a friend of her mother.
Other awards were also presented to
Teacher of the year – Lizz Higgens
Neighbour of the year – Irene Howard
Fundraiser of the year – Brian and Carole Fountain
Child of Courage – Rhys Crownshaw
Mum of the year – Hazel Phillips
Outstanding bravery – Michaela Dawkins
Dad of the year – Danny O Neil
Outstanding contribution to society – Eileen Mcmahon
Young achiever of the year – Sam Bradley
Chiltern Radio special recognition award – Gloria Mills
Talking about her daughter Sez told me, “Becca is really a great help, bless her. She doesn’t need all this responsibility but Social Services know all about it and they don’t do much to help!!! Becca is missing her childhood and teenage years because I have fibromyalgia and there is not enough help.”
Her proud mother said, “Becca loves Macfly and High School Musical … and this thing on TV called H2O about mermaids… She also loves Sponge Bob Square Pants… I like him too!!! But Becca doesn’t really get to see her friends out of school. They hardly ever come to the house … I think Becca feels I would not want her friends to see me like this on bad days when I am very bad…
“She is a good student and received a very good report just the other day. Becca’s report was full of 1’s and 2’s she had a couple of 3’s and one 4…. so I am very proud of her ….
“To be honest Becca really doesn’t have much of a life outside this house but Young Carers have just got her a mentor … this lady will take her out twice a month…. and National Children’s Homes have also got her some one to talk to…. Becca goes to my friend every Wednesday for dinner and my friend makes me a dinner too to give Becca a night off cooking,” Sez told me.
For four days after the presentation Sez was confined to bed by her doctor. The exertion of the presentation had just been too much for her body riddled with fibromyalgia.
“But it was really worth every minute. I would not have missed it for the world. Becca made me feel so proud of her. She is wonderful daughter and I could not ask for more from any carer. Becca was thrilled to meet Beverley from the X Factor and had her photograph taken with her” said Sez.
LIVING WITH FIBROMYALGIA
In our exchanges Sez spoke about her late husband who had died nine years ago at the age of just 27, when Becca was four years old. Then in 2004 when Sez’s Mum died of lung cancer her own health problems began.
Confined to her home she wrote, “I have a wheel chair but I can’t get any one to push as I am a big lady. My daughter can’t do it and my Dad has poorly lungs and he can’t.
“I am the youngest of five but see nothing of my brothers or one sister … my other sister does come round sometimes to help with house work. But I truly believe my family do not know how much pain FMS gives out. I just try and do what I can each day …”
I asked if she could exercise in a hydrotherapy pool and she wrote, “I have had hydro therapy in a lovely pool at the hospital but I am only allowed it once a week for 7 weeks. I then have to be referred again which takes ages…
“I do suffer badly with FMS but I am sure there are people worse off than myself… I have carers come in twice daily to help me shower and dress and then at night to help me get to bed…”said Sez.
To help her live with her fibromyalgia Sez has five different medications including one relating to a mild stroke she had last year. In hindsight she believes this was fibromyalgia kicking in and causing her bad pain throughout her body.
She says her doctor must be fed up with her or himself, as she feels he is frustrated about not being able to control her pain. She had tried two other drugs, which “made me so zonked out”.
Although her bath has been replaced with a shower and she uses a mattress elevator to lift her up, “The pain is still very hard to handle and it is not being able to go out that really makes me cry… I use to walk every day as I have never been able to drive. Now walking from my bed to the bathroom pains me something rotten…
“My daughter who is really good and helps as much as she can. She is classed as my young carer after social services had to become involved. I just feel like a total nightmare to my father and my daughter… some times I get that much pain in my legs I would rather have no legs!! I get lots of back pain, hip pain, my right arm gets so tender and I swell up a lot!!! I was meant to have a bone scan but I was too scared..
“I always try to smile and try very hard not to cry in front of anyone as I feel that will make people think I am crazy as you can not see anything wrong with me! On a good day I look fine!!
Asked if she belonged to any Support Groups, Sez told me, “I would love to know if there are any groups near me… if not maybe I could start 1 up … I would not know what to do… but I would give it a go… if poss… Anyway I shall leave it there as my hands are killing me…I look forward to hearing from you again. It is just great to have someone else who knows what I am going on about !!!!
“I would love to hear from others with FMS but don’t know how to get them to email me!! … If you know anyone who would like to email with me please pass on my email address to them…”
If you would like to write and congratulate Sez on the success of her wonderful multi-functional daughter, or would just like to make fibro-talk, or send text messages to Sez, send me your email and I will put you in touch.
And to think I was feeling sorry for myself with my 4 fractures and a bit of fibromyalgia. I should be ashamed of myself. Talk soon. Jeanne