My 8 year old little girl belongs to a rather wonderful majorettes troupe in our town. They really are wonderful and do very well in competitions nationwide. In April of this year we are going to the nationals which is a very important comp for the weekend in lovely Skegness. As she has only been going for little over a year, this is the first time she has been picked for the troupe and shes ecstatic and practising so hard bless her.
The other parents are a mix of people, theres the nice, down to earth friendly mums, the quiet mums, and the in a little group mums who wouldnt really go out of their way to make you feel welcome. They are not nasty but ive heard them have a little bitch and moan amongst themselves about other mums and these are the mums who run the committee and organize everything.
Now i do get along with everyone and no one at all knows of my fibro, chirari malformation and now this awful tri..(forgot it again....moffy what is it again please) neuralgia which is the bane of my very existance at the moment.
I take my daughter to the shows the girls dance at which is a huge task in itself as its an all day job of travelling packing, having at least 40 different girls screeching about hair, costumes etc and it nearly kills me and we also do carnivals and last year i helped decorate a float and then stood i fancy fress on it waving for 5 hours supervising the little ones anf i thought i would never be able to get out of bed again....ever!
I do my fair share of fundraising and such like and ive kept my problems well hidden, thinking about it now im not sure why....maybe its because i dont want people to talk about me behind my back you know the sort of thing...(well she looks alright.....shes obvioulsy a hypocondriac) im sure you are all familiar with the back biting! Or wrse, maybe i dont want their pity and i dont want to be seen as th one who cant do anything. I have never let them down no matter how ill and in pain i am.
Now, back to the reason for this blog. The mummies in the troupe particioate in whats called an "Adult Novelty" act every year where they do a rourine involving, baton twirling, poms and flags...getting dressed up and having fun. This is a very hotly contested event every year and we are always first or second which is great and of cours this year, the committee, behind my back have very kindly put my name down for it! When i was informed last week in front of everyone i was mortified! I just smiled and said that i wasnt really fit enough for that. No excuses i was told....its great fun.
So i thought about it for a few hours at home and came to the conclusion that i could give it a go, i even allowed myself to be a little excited. OH, my son and especially my daughter were not quite so enthusiastic though. My daughter started crying and was so upset "But mummy, she wept, mr fibro wont like it!" How heartbreaking was that? Pretty heartbreaking is the answer, but i gave her a cuddle and explained that Mummy doesnt want people to know about mr fibro at majorettes cos people will think of me differently and sometimes in life you have to push yourself just to see if you can etc....
Now this week has been the worst week i can remember pain wise...not only could i have killed myself overdosing on meds i was in so much pain with the tri...neuralgia, mr fibro, not liking to be outdone by anything,has decided to play up too, resulting in extreme pain while doing anything including walking. Indeed not only do i walk like a zombie because of all these new meds for the neuralgia, i also feel like one so another trip to my sainted gp tomorrow i think! The pain in my face despite all the meds is still very much there im afraid and last night i was so hunger crazed as i havent been able to eat since tuesday, i gobbled a tin of cold rice pudding down!
God, it felt good to have food in my belly!
As stubborn as i am, even i can see i am not fit or well enough to start practising for this adult novelty routine and the rehersals start this afternoon. I did try to tell the head of the committee through the week that i had a medical condition theefore i doubt i could do the dancing to which she replied "if i can do it, anyone can" bearing in mind she is a good 10 years younger than me and is an adult majorette who runs around like she owns the place!
Today is crunch day...i have to do something.....do i just go for it and suffer later, or what do i do??????? I already feel so sad inside cos i really had talked myself into doing this....just for me! Im sure some of you can relate to that. I feel so angry with my lot in life cos i want to do this so much and i always push myself no matter how rubbish i feel.Wednesday this week was the only day ever since fibro or ever for that matter that i had to admit defeat and lay on the sofa, swallowing far too many meds and crying, the pain was that bad!
I feel like ive let everyone down including my little girl and i dont know what to do!
Please, any advice would be much appreciated. Charlii xx
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Hi Charlii.
What a choice! I can totally sympathise with your dilemma. And I really feel for you, wanting to support your family, and also wanting a little something for you too.
But, honestly, I think you are right to be rethinking your decision. With the week that you've had, starting this new thing is probably too much right now. If I was in your shoes, I would explain about the neuralgia. Tell them that you are in a lot of pain with it, that you are on very strong pain meds, which make you feel like a zombie. So apart from the tiredness of being in constant pain, your brain is a bit fogged up so you don't think you can learn the moves. You don't want to let them all down by being the weakest link! So, this year, it is just not going to be possible. You are obviously disappointed, as you'd started to look forward to it, and sorry to let them down, but better to let them down now, than nearer the time of the competition.
The benefit of this explanation is that it is all true, it doesn't mention fibro, and it leaves the door open, maybe, for next year. Who knows, by then the fibro might be under better control too!
You can also ask if there is anything else you can do to support them in this competition, rather than taking part.
Good luck with it all.
Kaz
xx
You haven't let your family down at all your children know how ill you are ... So get that idea out of you head now.... Wags finger firmly..... However what you do need to say nicely and politely to this arrogant woman who obviously likes winning every year or coming second... Is that you have a medical condition that means that if you push yourself to compete the team will undoubtedly come last that should stop her in her tracks... if it doesnt then explain you will cause your body harm and your family come first and you are not making yourself ill over a dancing competition for mothers at the expense of your family... Obviously there are nicer ways of wording it I,ve just put it out bluntly.... But we all know our limitations ... And my skin has grown so thick over the years I just say it how it is now , but I am sure you will find a slightly more tactful wording There is nothing shameful about being chronically ill whether visible or invisible. better for the mums to know you are ill and physically incapable than have them think you just don't want to join in.
Hi charlii - the only person you are letting down is YOU!!!!!!
Tell this bossy, self-centred woman that you are too ill to do it, and that you have to put your home and children first.
I know it's cheating a bit, but I always tell people I have severe arthritis. They seem to understand that better than fibro - which they don't know about at all.
Or you can be really evil and tell them that you have a rare blood condition which becomes very contagious when you over-exert yourself! Fibro rarely gives you any fun, but watching people's jaws drop is a moment to treasure!
Why do you need to explain, anyway? It's absolutely none of their business!
Just do what you feel comfortable with behind the scenes, and if these people can't let you enjoy it in your own quiet way, then I don't think much of them.
Your little girl would be very unhappy to see you become more ill than you are - that's more important to her than any prizes or events. At least your children have you with them - if they lost you, they would be so much more upset - kids are tough and they accept their parents' physical limitations - they just need to know you love them and you're there for them.
VG is right - you have to grow a very thick skin - you'll feel much better for it, and if there's one thing I've learned in my long life it's that other people's gossip and nastiness just doesn't matter one bit - it just shows them up for what they are.
Don't give it another minute's worry - concentrate on yourself and your family. We all need social life, but if one particular area gives you grief, don't hang around - move on to something better.
Take care now - we're all wagging fingers at you and threatening a slap!
This is realy good advice , wish somone had given it me , i escolated my condishon , becous i dident wo t people to think i was boring . I endud up keeping myself going on combo of meds an alcohol . Well the cats out the bag as i hd one episode after another an its damaged heart so carnt run around an b thear fof everyone . The morel of this story is no mater how u try t pretend this isn't happening it is . The people your trying not to let down i:e your family getetdown in the end if u keep ushing yourself into compleat melt dow'n .
Cus face it its our family that pick up the piece when we r worn out . Not the people that pushed us to do it , for u thats the mom at the dance troupe.
For me it was my whole group of friend ,who dont come near since i do t drink an run around helping them . So b true to who u r b round of what u achieve an who u r , A good wife , mom & friend .Not what people think u should be . Hope u make the right decision fir yourself an your family, not for peoe that whont b helping u out when u have a bad day xx kugagirl xx
Don't put yourself on a guilt trip Charlii. You would never let your little girl down, it seems she is wise beyond her years and knows your limitations far better than you do.
Don't let this Head of Committee bully you into even attempting to do something you know you shouldn't. You need to tell this person that although you had hoped to keep your health problems to yourself, the fact remains that you have a disability, are in a lot of pain, and though you would very much like to, you simply cannot participate in any physical activities. As KazF suggests you could ask if there is anything none physical that you can do to help or support them.
If they are half human they will understand, but if they don't believe you, or want to go away and gossip, let them get on with it. You need to put yourself and your family first, and if that means confessing to having a health problem, then maybe you should consider doing so. There is no shame in having Fibro, we don't choose it, it chooses us.
Good luck
Em x
Aslong as your family and you know thevtruth thatsvall thatbcomes back to your home everyone is entitled to think what they like butbthats THEIR imprssion not yours stop pushing yourself I was embarrassed aboutbshowing illness and pushed overbthe limit I am now a wreck in an electric wheelchair with bad deoression. You owe it to your lovely caring little girl to give her the energy you are using on the others what a wonderful mum you are.
Firstly, that committee woman is so far up her own b...!! ARGH!! What a bully. I'm a very rational sort, but when it comes to bullies I seethe!! Do what's right for you, you don't HAVE to do it. There's no law making you do something that's going to make your condition worse. What a horrible person she is. I wonder how many 'friends' she actually has??!!
Secondly, just to say that I'm so glad to see you on here blossom. I did worry about you yesterday. Hope today you feel a little clearer.
Lots of warm thoughts to you both, S x
I think maybe you should listen to your lovely little girl..... mr fibro won't like it.
Thats what matters.
Acceptance of this condition is not hiding it away to that others don't know about it ... in case they treat you differently.
Pushing ourselves to be what we think others want us to be is a big part of this condition.
We are who we are....and a big part of that is mr fibro.
Like it or not...sometimes we just have to say....sorry that really isn't part of my pacing routine. If I don't keep to my pacing routine I won't be able to cope with the general daily living needs of myself and my family.
what is more important x
I don't think thats letting people down....I think its good self care.
Not something we tend to be good at.
Guilt is NOT our friend....
Hi Charlii, as others have said you are not letting anyone down and this woman who is putting you under pressure sounds like a 'not very nice person' to put it politely!
I am in the early days of fibro only diagnosed by my GP for now but haven't had it confirmed by the rheumatologist yet....and I rarely tell anyone and if I do need to explain to someone I say 'My GP suspects I have a type of Arthritis' which is true and saves me having to explain or deal with the non-believers...
You could mention the Trigeminal Neuralgia and tell her this is the reason you won't be taking part this year. Whatever you decide put yourself and your family first and in my opinion not taking part and minding yourself would be doing just that. It's ok to feel bad or sad that you can't do something because of Fibro or any illness but don't feel guilty, you are letting no one down Take care xx
Charlii, I do feel for you, but don't think you've let anyone down because you haven't. I personally would suggest that you try to be a bit tougher with people (easier said than done I know), tell them the truth, if they don't understand or like it it's their problem not yours. There will always be more people out there who don't understand than do, but as long as we are true to ourselves and our families that's all that matters. We don't intentionally let anyone down.
The mere thought of you having to prove yourself to others by the adult routine is crazy in my opinion. Also you face the added problem of once you do give in, you will then submit yourself to something else another time and so it goes on. Nip it in the bud, people might not like it, but they will very soon realise that you aren't/can't going to do/do these things and they won't consider you in this light any more. If you start they will think you always will be able to at the drop of a hat.
Look after yourself and your family, be there for your daughter, but think of yourself too. You sound like a lovely mum and a genuinely nice person, it's their loss if they can't see this. My advice would be don't give your time to people who don't understand or who won't make allowances for you.
Give yourself a gentle pat on the back, you're doing just fine, well done! Don't reproach yourself for what happened last week, you're a good person, sometimes even the best of us find it hard to cope with relentless pain. You've turned it around brilliantly! We are always here for you and we are proud of you too!
I know exactly where you are coming from not wanting people to know. Only my husband knows I have fibro, even my girls as yet don't know. I feel a bit like you, that I don't want people to look at me differently but also I don't want to have to admit to myself that sometimes I am limited in what I can do. The way I see it though is that even if you didn't have fibro you should never feel pressured by anyone to do anything. I am sure the mums have the best of intentions, after all they don't know they are being insensitive as they don't know you are ill. I find it very hard to say no to people but I just think to myself I am a 43 year old woman who has made a success of my life (okay so now I am held back by fibro) with a good (albeit stressful) job, two gorgeous girls and a husband who has stood by me. I don't have to justify or explain myself to anyone. If I want to say no, I will, very politely - why should I have to explain my reasons? I am old enough and daft enough to know my own mind. The only people that matter are you and your family. It's funny but I think you had the best advice even before writing your blog or reading what we have posted with all our (supposed LOL) years of wisdom and that came from an 8 year old little girl - your daughter. She sounds AMAZING. I think you already know what you have to do but I wish you lots of luck and hugs and that your lovely daughter has the best time at the competition ever. MP x
When I was 9 my mum had a massive stroke and couldn't read, write or use a knife and fork. When I went to high school she was learning to read and write again. I was a swimmer and desperately wanted her to watch me swim in competitions but she never did. You are truly amazing supporting your little girl as you do and she will always love you for it. The other mums are perfectly able to do their 'adult Novelty' act without you if they regularly get 1st or 2nd position and should respect your wishes not to participate, especially as you have volunteered to do anything else you would be happy helping with. If you do take part you may find yourself unable to drive back from Skegness and that would leave you in a real pickle! Skegness is not the greatest pace to be in the winter months! It's also miles from anywhere, even the nearest hospital is in Boston! I would suggest you find a way to tell them 'thank you but no thank you'. You need to hang on the any good health you have and although your little girl would be proud of you if you did take part I'm sure she would be much happier if you are able to get up on the following Monday morning to take her to school
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Fibro rarely gives you any fun, but watching people's jaws drop is a moment to treasure! 
Take care xx
Feel like I'm in a battle ground for having fibro as I've Been turned down by DLA for fibromyalgia. 
feel like a right numpty ,broke down at docs :(
Feel like I`m going round in circles
I feel like I've had enough 
Feel like I am dying
