GAME FOR A LAUGH?

By Jeanne Hambleton © 2009

If you are a fibromite, you should read this!

Apart from the specialists who tell fibromites their pains are all in theirs head and I have it on good authority there could be up to 82% of them, one specialist after diagnosing me with pain for life (FMS), warned against groups. He said groups were all doom and gloom but he could not have been more wrong.

Just this week I arranged the first meeting and a social lunch for those suffering with fibromyalgia in and around Portsmouth. For my sins, in my tea half hour, I am also a support group leader for some fibromites in Chichester and Horndean, Waterlooville.

As I live in West Sussex, driving into the unknown wilds of Hampshire (Horndean to be precise which is a nice little town) I had some trepidation (I was a bag of nerves) and leaned heavily on Pauline and Carolyn, two of my Chichester fibromites, to come with me for moral support.

Needless to say we got lost. That was when the laughter started and I could not work the sat nav. Well being someone with fibro fog, you would not expect me to work out something as complicated as that, would you? Thanks to some nice young lady is a blue sport two seater who said, “Follow me!” we arrived in the nick of time.

The meeting was a hoot from beginning to end. People with varying degrees of pain and fibromyalgia floated popped in, some stayed for three and half hours and had lunch. We laughed and laughed found out how many of us were often still in our dressing gowns in the afternoon. We even heard that Carole in her heyday stopped traffic when she wore a boutique’s hot pants, the first ever seen in Portsmouth. We also learned that Carolyn stopped traffic Paris with her mini skirts. Her mother was so embarrassed that a needle and cotton was called for to let down to the extreme what hems there were.

Please do not ask me why one of our new members always wears one long dangling earring. I will have a bout of hysterics. She even admitted she likes to wear odd socks and has another pair just the same. We were collapsing in laughter. By now we were inspecting her wonderful shoes which exercise the body as you walk. Truly amazing. She was the life and ‘sole’ of the meeting if you will excuse the pun.

I am sure at the end of our lunch meeting we all felt better than we would have done had we had one shot of the three FMS drugs – Lyrica, Cymbalta and Savella.

We did have some sober moments when we all agreed to respect one another, sort out any disagreements rather than leave the group, and talked about fund raising for research as there is no Government funding. The members agreed to raise awareness about fibromyalgia even if it meant hearing the dreaded, “Fibro what?”

So it is all true. Laughter is the best medicine. It is free. You do not need a prescription. You can laugh anyway – well there are a few odd occasions when it might be out of order. But it certainly makes you feel better.

Anything you can do get have a laugh is really worth the effort. Look at some old photographs. (Look at Aunty Mabel’s hat at Mum’s wedding. Do you remember that holiday you had….Read one of the children’s comics – they must be funny, the kids think so. Put on a silly DVD. If it comes to it look in the mirror and see what silly faces you can pull to frighten the family

So they will think you are losing your marbles. If it is good enough for the Prime Minister to lose his marbles it must be okay for us. Ring up a friend and have a giggle. Join one of the round robin emails for funny stories. Look up ‘jokes’ on the interest. There are hundreds on any subject. I am told laughter can actually improve health and help you fight disease. Food for thought.

So if you happen to be suffering with mysterious pains, chronic fatigue, cannot sleep at night, get your words confused, have irritable bowel syndrome, stumble around when you get out of bed, have dodgy balance, dizziness, headaches, and much more, and fancy sharing a wee while with us in Chichester, West Sussex, or Horndean near Waterlooville, east Hampshire, ring the helpline 0845 345 5942 or email me fibrowhat@mac.com for dates, times and places.

My thanks to my new members especially those who travelled some distance, to making us laugh. In no particular order they were Donna, Carole, Lisa with her Bright Sparkles, Susan, Laura, Pauline, Carolyn, Jo and her delightful little daughter Abbey who played happily with her colouring books and her doll. We are currently awaiting the announcement in 16 weeks of the birth of a new kitten for Abbey, to be called Bubbles. It was great to see Terri, a personal trainer, and share her wisdom. We look forward to some easy exercises from her at a future meeting.

Our chosen venue (the TalkTalk restaurant at The Red Lion, Horndean) was all we could have hoped for with good food, lovely décor, spotlessly clean, great service from staff who smiled and talked to you. We are booked in there for the foreseeable future. All in all it time was well spent and as Carole said, after all the laughing she felt tired but happy and light hearted. We cannot wait for Tuesday, February 20, when we all meet again.

FOLLY POGS LOSE THEIR BALL

By Jeanne Hambleton © 2008

 

As I write this on Friday September 12 2008, the Night of the Folly Pogs Ball, I am sipping a stiff drink to drown my sorrows and feeling a bit dejected. 

 

I have even received a good luck message from Marilyn Kellow, Leader of the Christchurch FM SG, as well as voucher for flowers, a bottle of Scotch Whisky, and some money to buy raffle prizes, which have all been returned. It is obvious that our bad news has not reached north of the Watford gap – probably because I am not proud of it. 

 

While I should have been busy pampering myself today, ironing my glad rags and getting ready to go to the Ball like Cinderella, I am afraid it was not to be. Talking about glad rags I had threatened to go to the Ball in sackcloth and ashes as we were hoping there would be some Page 3 girls there, so who would be looking at me. But as it happens I did not have to buy a posh frock. 

 

My ‘normal’ colleague, Sarah Owen, a yoga teacher – no fibro but lots of energy – and I were gutted the event could not take place. As the date loomed nearer and we pushed out more and more press releases and information about what a really great night it would be, we did not have the flood of requests for tickets, which we hoped for.

 

As we were very concerned we met the hotel manager at the Chichester Park Hotel, to seek his professional advice on our low numbers. Although he was going to lose business and Sarah and I were so disappointed, he said, very wisely I thought, it was better to have a disappointment than a disaster. He felt the low number of number of guests would not provide the atmosphere needed to make the evening a good night and allow the comedy cabaret to perform to the best of his ability. People may consider coming again if they got their money back, but if they came and it was a flop we would lose a good reputation. As someone who knows the business we had to agree with his logic.

 

So very sadly we were advised to cancel the Folly Pogs Ball. We are out of pocket (and put that down to experience) and but our personal disaster was not to have raised the £1,000 we hoped for towards research to find a cure.  We can only lay the blame at the door of the economic situation (dare I say the Government?) and the worldwide financial situation. Everyone is feeling the ‘pinch’. So we were just choosing the wrong time and it was not what we were selling but lack of personal funds.

 

It was really beyond our control and although it sounds a poor excuse we must blame the credit crunch. I really could not have done more in the way of publicity. I even had emails from the States about the Ball.

We do hope to hold this event when the country’s financial situation is easing. We toyed with the idea of making another date but who knows when this will all end. Having said that Sarah is already planning Pamper Evening for Mother’s Day to raise funds for research.  She is a good friend and used to teach local fibromites yoga. Our web mistress is planning a ghost hunt to raise some funds – so it is an ill wind and all that….

 

It is a shame it did not happen. I am sure if you had come you would have had a great night out with lots of laughs. Maybe next time? Fibro hugs. Jeanne 

WELCOME TO FIBRO FOLLY POGS

By Jeanne Hambleton © 2008

 

Sorry if Folly Pogs sounds a bit of a silly name – but to be honest our official title was more than the 21 letters allowed on our new account cheque book, so we started to play around with shortened names. Guess who drew the short straw?

 

Although the East Hampshire Borders Fibromyalgia Philanthropists Support Group aka Folly Pogs may sound flippant, we do have serious business in mind.

Our mission is raising funds for research into fibromyalgia to find a cure.

 

Fibromites will know after they are finally diagnosed – often after years – they are certainly relieved to have a name for the aches and pains 24/7, chronic fatigue, sleeplessness, forgetfulness, dizziness, stumbling, headaches, IBS – shall I go on or are you nodding off?

 

Once you know you have fibromyalgia you are told there is no cure and it will not kill you. What a relief! However you then suddenly realise that you will live in pain for the rest of your natural life. Not a great prospect.

 

When it happened to me I was angry about this damn condition which I felt had stolen my life – one I was living at top speed – and at first I was in denial. I felt no one would employ me if they thought I was ill. Then it dawned on me that I really could not work full time ever again and I had to come to terms of living with my invisible disability.

 

Fibromyalgia is described as invisible because you look so well but feel to awful. You long to dance again, ride a bike, play with the children in the park, even do your own housework – get those curtains down, washed, dried and back up again before dark. All this becomes a pipe dream especially when some folk think your inability is just laziness.

 

Do you know what hurts the most? When people think you are pretending, swinging the lead, pulling a flanker, skiving – yes all those terms are used. When in fact you just wish you were able to do all those things and felt like you did in days gone by.

 

Depression often plays a big part in fibromyalgia as people suffer pain and know it will not go away.  But once you afire down in the doldrums, there is just one way to go, and that is back up.

 

You must learn to live with your fibromyalgia – think positive and occupy your mind so it is so busy enjoying something you like, that the brain forgets to send out pain signals. It sounds simple but it does work.

 

NEW SUPPORT GROUP

 

This new group came about as I had several friends who found travelling the long distance to the meetings of the nearest group too hard and painful.

 

So now we are organising social lunches. We start at 11.30am – giving fibromites time to stumble out of bed and fight with washing and dressing themselves.  We chat, socialise and have lunch and enjoy the company of like-minded people.

 

We have just had two meetings and already the numbers are growing.

 

If you have fibromyalgia or think you might have this condition and want to talk about it, you are welcome to join us if you can get to The Selsey Tram public house, Donnington, Chichester, off the A.27. We have big plans for our Christmas lunch on December 11 2008.

 

You will need to email me for the details at follypogs@me.com

 

FUND RAISING

 

Our first biggest venture for raising money for research is The Folly Pogs Ball. This is due to take place on Friday September 12 2008 at the Chichester Park Hotel, Westhampnett, Chichester.

 

Conscious that laughter is the best medicine we have arranged an award winning comedy cabaret – Dominic Dry who appears on the same bill at Joe Longthorne, Frank Carson and Mick Miller on the Blackpool circuits.  He is so funny.

 

It was Dominic who wrote our Fibro What CD with three of his own humorous backing tracks. He donated the music to us to help our research funds.

 

Log on to www.domcollins.co.uk/MYSPACE to here the music.

 

The Fibro What CD has been so popular we are already selling copies for Christmas gifts – not bad at £5 including packing and postage in the UK.  You do not have to have fibromyalgia to laugh with Dominic and his funny backing tracks.

 

The Fibro What? slogan went so well that we also have tote bags, great with the loss of shopkeepers’ plastic bags. These announce “Fibro What? Fibromyalgia” and my favourite “My F Word – Fibromyalgia”. Much better than Gordon Ramsay’s F word I think. These are also a good price for Christmas as well as practical for Mum, Grandma, or family members.

 

IT IS ALL HAPPENING

 

Yes we are planning on moving mountains down here in the south and if you would like to become a supporter and virtual member of the Folly Pogs with newsletters and invitations to future events, in return for a donation to our research fund do let me hear from you.

 

Maybe you would like to come to the Ball. Just buying a ticket will benefit research and help two million fibromites who are waiting to be cured.  We are doing a charity auction and would love any unwanted gifts, trinkets or nice things.

 

If you have just been diagnosed by a doctor who said there is no cure, go away and look at the Internet, talk to us, we will help.

 

If your GP thinks you are a mad malingerer and the pains are all in your head – contact like-minded people – us. It is real – yes, fibromyalgia is a real pain and it hurts.

 

If you are suffering with stress overload, juggling your career with home, family and the credit crunch and are full of mysterious pains and think you might be one of us – get in touch – that is what we are here for. Stress and trauma are major triggers for fibromyalgia, who is thought to be hereditary. Did your parents have ‘arthritis’ – but was it arthritis or undiagnosed fibromyalgia? Maybe you had growing pains as a teenager – could be the first sign.

 

In the States they believe fibromyalgia is reaching epidemic proportions worldwide. Is it coming to a house near you?

 

Why not come to the Folly Pogs Ball  – forget your aches and pains just for one night and meet some like-minded people – not mention having a good laugh. It promises to be a night to remember but you should book before September 2^nd to sort out menu choices.  If you book after the 2nd the only option may be no starter, baked beans on toast, warm ice cream, no After Eight Mints, and cold coffee no cream.

 

Why not join us and enjoy yourself – if only because you’re worth it!

 

Telephone 0845 345 5942 for tickets or information about fibromyalgia or email follypogs@me.com or jeannehambleton@mac.com

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