Fibro fog.

[Saskia]

I haven't written a blog on this site before but I have read what others have written and, on my better days, have made the odd comment. Most of the time I am just too tired to respond, but I do think of you all every day and you all have my heartfelt sympathy for whatever particular problems you are going through, whether it is the pain, the fatigue, poor concentration, lack of sleep etc etc, or other more personal problems that you are trying to deal with on top of the FMS.

I thought I'd just put my 2-pennyworth in this evening as I was writing Christmas cards earlier which, since having FMS, I find quite a chore on top of just managing to get through the day and I thought I was doing quite well until I looked at what I had written in one card and realised that I had written complete rubbish! At that point I decided I'd better have a break from it before I spoil any more cards. I am used to typing rubbish on the computer but put that down to the fact that I am not a typist so am bound to make "typos" and also my hands shake a bit (the jolly old muscle spasms!) so I often hit the wrong keys. It takes me ages to type anything which is why I don't bother very often. Obviously now, what with the shakes and the brain fog it seems that even writing by hand is going to be a bit of a challenge. My handwriting has definitely deteriorated over the last few years (I was diagnosed with FMS just over 10 years ago but the Consultant said that I'd probably had it for 2-3 years before being diagnosed) but at least what I wrote made sense!

I never find Christmas very easy as I lost both my gran and my mum at Christmas, 3 years apart, and last year a friend collapsed and died just before Christmas so I always feel very down in the build up to Christmas. I have to really get a grip on myself so that I don't sink too low into the depths of despair. Since my mum died I met my husband and we have been married for just over 10 years. He is my rock and I am lucky to have him but I do worry what I shall do if he dies before me, as he is 10 and a half years older than me. I love him to bits and for his sake I try to make an effort at Christmas We have been together for 13 years and this will be the 1st Christmas that we'll be on our own, as we have always had at least one elderly person to look after. Thank God, this year our elderly friend is going to her family. I breathed a huge sigh of relief when she told me this as I really do not feel up to looking after anyone else this year. I just don't have the energy. So Ian and I are going to take our lovely dogs out and eat our meal in the evening and we can be absolute slobs if we want to. Yippee!!!!!!!

Hmmm.....I think I still have a pile of Christmas cards to write! Oh dear.......better not get too excited just yet, then!

Anyway, I sincerely hope you are all surviving all the preparations for whatever sort of Christmas you are all planning, expecting or hoping to have. I also hope each and every one of you is able to enjoy the holiday as much as possible within your own personal limitations of living with this disability. For me, getting out of bed will be the first challenge!!

Very best wishes to all of you and love and hugs Saskia XX

[pinkblossom]

Hi saskia

Lovely to hear from you,your blog is well written so congratulations! its also really lovely to hear you have a wonderful supporting partner and make the time every Christmas to make it very special,I'm sorry to hear of your loss,I too have lost someone dear,my father died and so this time of year is very difficult so I try to make Christmas special for my mum as I know how much she misses dad,I'm afraid I don't enjoy the Christmas season as I had a very bad exsperience many years ago when I was young which I have never spoken about to anyone and it feels like a big shadow that looms up behind me every year and stops me from smiling,I just put on a false smile! Ha Ho...soon be over!

I do hope you and Ian have a lovely relaxing Christmas,lots of gentle hugs..Julie xx

[Saskia in reply to pinkblossom]

Thank you so much for responding to my very first blog, Julie. I am so sorry to hear that you lost your father but it is so good that you do your best to make Christmas as nice as possible for your mum. I am sure she must really appreciate the effort you put in, especially as you have FMS which makes everything so much harder to deal with.

I am concerned to hear about your "big shadow" which looms at this time of the year. Whatever it was must have been a very traumatic experience for you, especially as you were young at the time. Do you think you might ever be able to open up about it to a professional? I am not suggesting that you do. Only you know how you feel and what you would be prepared to share in a confidential setting. I just feel so sorry that, whatever it was, looms large and casts a shadow over your life every year. It is a lot to deal with on your own. I have had counselling over the years. Some counsellors are more helpful than others but, if you find someone with whom you can build up some sort of rapport, then after the initial uneasiness it can help to get things off your chest. I have a lot of childhood "stuff" that I still carry around with me and I think that is what has made me the over anxious person I am. However, I am a great deal better than I used to be but I fee that I could have achieved so much more in life if I hadn't been so lacking in confidence. It doesn't really matter any more as I had to take ill-health retirement when I was 50 and I don't have to answer to anyone in authority now, thank God! I feel so sorry for younger people who are still struggling to work with FMS and perhaps still be trying to raise children, too. At least I am in a position at the moment where I can just take each day as it comes.

Thank you for your good wishes and I wish you a happy relaxing time with your mum. Take great care of yourself. Love and hugs, Saskia.

[pinkblossom in reply to Saskia]

Thank you saskia for your concern,I know it is something I should have delt with but just couldn't take that step,I was told I had fibro in oct 2011 so have been struggling to live with for it for just over a year,I have had oesteo for 5 years,I was offered cognitive behaviour therapy as part of my pain management programme this year but turned it down at the last minute as I was afraid that I would have to talk about things in the past with a man which I didn't feel I was able to do,though a couple of weeks ago my Dr has suggested I do give the CBT ago but I'm really still not sure i can go ahead with it,maybe one day I will be able to talk about it.

I do hope you carry on posting blogs,there are so many lovely people on here and its just so nice to get things off your chest and there's always someone who shares the same problems as yourself so its good to hear how they are dealing with things,you sound like a really lovely lady and I do hope we shall hear from you again in the future...Julie x

[Saskia in reply to pinkblossom]

Hi Julie,

I had to really push to get a CBT referral and when I arrived for my first appt. I found that I had been assigned to a man. My 1st thought was "Oh no, I am not going to be able to talk to him" simply because he was a man, but I hadn't got the heart to say I'd rather speak to a woman, so I persevered. He turned out to be the best counsellor I have ever had and he was the one who helped me the most. What was interesting was actually having a man's perspective on things. I used to be incredibly anxious before every session and was in and out of the loo as my bladder goes into overtime when I am nervous! I was so glad that I stuck with it and, because he realised that he was helping me, he gave me twice the number of sessions that one would normally be allowed, for which I was extremely grateful.

Maybe one day you'll be able to pluck up the courage to see someone. You'll know in your heart when you are ready. It is never easy opening up to a complete stranger but they are professional people and probably fairly un-shockable. It is we who feel embarrassed.

Just wanted to offer you that bit of encouragement.

Night night!

Saskia XX

[pinkblossom in reply to Saskia]

Just simply....thank you xx

[Hidden]

Hello Saskia, lovely to read your blog, thank you so much for posting it for us all to read.

I am sure Christmas stirs up many memories for us all, some very sad and hard to deal with, it's the time of year when we tend to think more isn't it. We always have my dear Mum because she is on her own now after we lost Dad three years ago, we try and make it special for her.

I am so pleased you have such a lovely hubby, that must be such a comfort for you. Try not to worry about the future too much, it tends to be the things we don't worry about that tend to crop up, not the things that tend to prey on our minds. Enjoy your time together this Christmas, live your life one day at a time and cherish what you have is the best advice I can give you during the festivities.

(((hug))) xxx

Libs

[Saskia]

Thank you so much for you lovely response to my blog, LibertyZ. It is so nice that you are able to have your mum for Christmas and I am sure she appreciates being with you. Mums are very special aren't they? Make the most of all the time you have with her. I lost my dear mum when she was only 65 and, from the date of being diagnosed with rectal cancer, she only lived 6 and a half weeks. It was such a shock and I feel sure that is what sparked off the FMS as she had been ill for a long time and I had been looking after her single-handedly and working for the NHS in a very busy department. Basically our GP neglected her and didn't send her for any investigations so that by the time another GP saw her (who happened to be on call) and she finally got referred to the hospital the cancer was so far spread (to her liver and her lungs) that there was absolutely nothing that could be done for her, other than palliative care. The Consultant Surgeon said that the tumour was so large that she must have had it for about 2-3 years and he said that he had never, ever seen anyone in such an advanced stage of cancer who had never been referred to the hospital for any tests. When my mum died I lost my best friend. I count myself very lucky to have met Ian, 15 months after losing my mum, as he is now my best friend. Not that we had it easy, as his family were all hateful, but his mum eventually died aged 97, having stirred up so much trouble that his 2 sons and daughter have nothing to do with us. The sad thing is that he had custody of his children and brought them all up, as his ex wife was not a very nice person or a good mother as she was too busy having affairs. He has a 10 year old grandson, whom we have never seen, which I think is very sad. The aggravation from his family also made me very ill to the point where I had a complete nervous breakdown and I think that compounded the FMS. I don't understand why some people have to be so nasty.

I feel so sad for Ian but he has accepted that they have nothing to do with us and so we just live our lives to the best of our ability and our little family is our 2 cats and 2 rescue dogs who all give us a great amount of love and joy.

As you so wisely advise, I shall just live 1 day at a time and hope that my lovely Ian goes on for as long as possible! Unfortunately, I am a born worrier!

I hope that you and your family have a lovely Christmas all together. Take great care of yourself. Love and hugs, Saskia XX

[PeppaRosie]

Thank you Saskia, i hope you are able to enjoy your Christmas and that it will be everything you want it to be. Your story is similar to mine. Last Christmas was mine and my husband''s first Christmas on our own. We put the turkey in the oven, walked the dogs and came back. I changed into my pj's, finished off the dinner and enjoyed the relaxion of a day free of trying to please others......BLISS <3 xx

[Saskia in reply to PeppaRosie]

Hi PeppaRosie,

Thankyou for responding to my blog. Your Christmas last year sounds like bliss, especially as you and your husband were able to enjoy your dogs and then please yourself for the rest of the day. That is what I am aiming for this Christmas....and no waiting on someone else hand, foot and finger! I have always enjoyed looking after others but realised this year, because of worsening fibro and constant fatigue, that I just cannot do it any more and I thought "Really, why should I?"....so I am slowly coming to my senses!!!!! In the past I have always just put a smile on my face and done it, but it does put a huge strain on one's already frail health and this year I thought if I have our elderly friend for 3 days and nights, which entails moving out of our bedroom etc etc ( a load of work and hassle) it will probably take me until March to recover and I just wasn't prepared to lose so much of what little energy I have. Thank God her family are having her this year. It is not before time and they are all much younger and fitter than me!

I like the sound of your PJ's! Might do the same!

Sorry to have rambled on!

Love and hugs

Caroline XX

[PeppaRosie in reply to Saskia]

Hi, I can highly recommend pj's. All the best for Christmas. <3 and ((hugs)) xx

[Hidden]

Thank you so much Saskia for your kind thoughts.

I can relate to so much in your blog too Saskia about problems in families etc., it can cause a terrible strain can't it.

I hope you manage to have a good Christmas too, you take care as well. (((hug))) xxx

Libs

[Janethaywood]

Hi Saskia I know this blog is very dated but your story had parts in it that almost fit my life to a T. Family, if you can call some of them that, can be vicious I think. I lost my darling daddy in 2002 and mum died 4 years ago in March just gone, I wasn't as close to mum as I was to dad, but over the years, I stRted creating a bond with my mum that we hadn't had before. She was unshakable my mummy, you could tell her anything, nothing bothered her. Probably because she was glued to Grand Prix or 🎱 snooker, any sport really, she adored them all, purely a TV 📺 fan lol Then she was diagnosed with stage 4 lung cancer n given 12 weeks to live, I felt like someone had ripped my heart ❤️ out. God I'd grieved for my dad but nothing like this. How do you go on without your mum? 😢😢 We had our last xmas with her n she was ridiculously ok thank god. But she always was the tough lady! We got our last mums day with her, then on the 24th march 2012 she passed away holding my hand, while my sister desperately tried to ring the district nurses. She opened her beautiful green eyes n looked at me for one last time, I thought it was a beautiful and fitting moment really that I should be with her as she left this world, because she was with me as I entered it 😢😢 See I've gone totally off subject now with thinking about mum and dad, I do hope things are better for you, and that yourself n Ian enjoyed your peaceful Christmas, because that's how I intend to spend mine this year. 1 hubby 2 shih tzus and me lol perfect recipe 😘 Take care n much love ❤️