About Me

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Newport, Gwent, United Kingdom
I have to manage my FM very carefully, I am a wife and mum of 3 kids, and I work full time. I have good days and bad. I love learning. This is my experience of Fibromyalgia, I'm not promoting any products, just sharing what helps me.

Saturday, 5 November 2011

Mini Celebration!*~+**

Today I find that I have the energy and positiveness to feel good, in fact I'd like to quietly celebrate two little things.

Firstly, I went to the doctors last week for a medication review. I had found that my sleep was growing increasingly more difficult and as a result I am having terribly disturbing nightmares. I do have nightmares whenever I am under stress or have been involved in any unpleasantness, even if I see someone unrelated to me having a bad time, it's enough to bring me nightmares. But recently they have been unrelenting and very disturbing. It's always the same type of nightmare related to a certain period of my life; perhaps I'll talk about that at another time.

Anyway, my doctor was as always very understanding and has prescribed an additional sleeping tablet (Zumenov I think). This is in addition to the Amitriptylene that I'm already taking. She warned me not to take the extra sleeping pill unless I really needed to and wouldn't be driving the next day.

I took the first one last night and have got up this morning feeling almost refreshed. I think that's the right word because it's such a long time since I felt refreshed after a sleep that I might be imagining it.

Of course it could have been wishful thinking on my part and might not happen again; but today I'm going to take it for what it is and enjoy my little respite.

Secondly, which is a more worthwhile and long term acheivement; I haven't had a day off sick since I started my new job in April. Granted, I did come home early one day from the office with a migraine. There has also been the odd occassion when I didn't feel up to driving and my wonderful husband came with me; moral support more than anything, but it helped.

Not a single day off work sick since April; I must be doing something right!

The next few weeks will be a good measure of my condition as I'm already worrying about Christmas and the additional effort that I'll need, not to mention the additional money.

But you know what - I'm optimistic! What a lovely way to start the day.

Keep well

Dee

Sunday, 16 October 2011

Ambition or Acceptance?

My husbands ambitious; he's never satisfied with his 'lot'. He's always finding imaginitive ways to push himself further. Sometimes he's successful and sometimes he's not, but he never gives up.

He runs his own business and he does have times when he feels like he's not getting anywhere but before long he finds another bout of energy and another idea to push ahead with.

I used to be the same; I wanted a high powered job, I wanted to be successful and in control but thanks to FM am having to learn another way of life. Acceptance!

It's somewhere between fighting and giving in. I can't fight it because that uses up valuable energy and doesn't get me anywhere. On the other hand I can't give in to it either. I'm not the sort of person to lay down and give up and I never will be.

However, I'm learning my limitations. On a good day I know I can work and drive and chair important business meetings, on a bad day I know I have to allow the FM to run it's course and maybe stay in bed.

That's not giving in, it's just letting go for a short time. I know it will pass when I'm having a bad day, so I have to accept that today's not going to be a good one and accept that I might have pain but I know that it will go away.

Sometimes I need my husband to remind me but most of the time I know that eventually the bad day will pass and I'll feel better again.

Bring on tomorrow!

Saturday, 15 October 2011

Fraught festivities.

Over exertion has left me jaded. Daughters 21st birthday weekend, house guests, heavy meetings at work and general day to day chores and all of a sudden I'm out of energy.
So now I'm wondering how I'm going to cope with Christmas! There's no option this year I'm going to have to be super organised.

It always amazes me that just when I want to be ok; like when I've got time off work, or when there's a party or something special organised I get ill. For the past two Christmases I've either had a bad bout of flu or a nasty viral infection and have been out of action.

Last year hubby not only had to do all the present shopping in the lead up to Christmas but he also had to do the food shopping and cook the Christmas dinner. I'm so lucky to have him!

So this year, I'm starting early, I want all the presents bought by the end of this month, then I'll plan the meals and the table and spend November organising the bits and pieces in advance.

That will leave me only the food to do before hand. I shall not be making my own cards this year as that adds unneccessary pressure to my load (even though I do enjoy it).

So watch this space, and I'll let you know how my plan is progressing..... the count down has started!

Saturday, 10 September 2011

Lucky stars.

This week I have thanked my lucky stars over and over again.

As we remember 10 years ago, and I see the headlines every day of sadness and suffering of others, my selfish complaints pale into insignificance.

I was driving home on Friday listening to Jeremy Vine on radio 2 whose guest remembered interviewing a lady whose husband was trapped in the second tower and how they talked on the telephone until the line went dead when the tower collapsed. It made me cry.

I've had a run of bad luck over the past two weeks, car trouble, kid trouble, a robbery, work problems add in the FM and you could describe it as heavy (!).

However, let's get perspective, it could be soooooo much worse.

I'm lucky in that I have a wonderful husband, 3 great kids who aren't any trouble (they're just normal kids), I have a lovely house, a great job, fantastic family and money's ok. Except for the FM we're all healthy, what more do I need?

Some people would give an arm and a leg to have what I've got!

I'm grateful for my lot, and even my FM is manageable so nothing's gonna get me down anymore.

It's not bad luck I've had these last couple of weeks it's good luck; think what could have happened!

Stay well.

Dee

Calm before the storm?

It's been nearly a week since my last entry because I have been away on business and have been trying to pace myself rather than spend my evenings on the net.

However, this week, I have driven around 1000 miles, dealt with the after effects of my car being broken into and theft of some personal belongings and my son having a car accident. I still managed to represent my company at a two day event and pitched for an additional contract valued at £25k (outcome to be decided), you could say it's been quite full on.

It's Saturday today and although I did sleep until 11.30am (I find I sleep better during the day than I do at night)  but I feel.....ok!

I'm not hurting or aching, I don't have a head ache and I feel quite alert (at least for me). Have I turned a corner?

I'm beginning to wonder if the events of this week haven't actually caught up with me yet? Is it too much to hope that there won't be any after effects? Would that be unrealistic?

I have meditated quite alot this week and I have taken three doses of migraine medication on 3 seperate days which helped to avoid a full on migraine attack, so perhaps I could claim to have paced well?

The jury's out at the moment; it's too soon to tell. Perhaps I've just been lucky, or perhaps I've practiced what I've been learning all these months: pacing, accepting, floating, meditating.

As Doris said que sera sera, what will be, will be!

I guess time will tell.

Stay well.

Dee

Saturday, 3 September 2011

If I Had The Answer...

I know we don't live in a perfect world, and yes, I know I'm an idealist but if I had the answer, the secret, the remedy, for Fibromyalgia I'd tell you all, I'd spread the word, I'd shout it from the roof tops. I wouldn't sell it to you.

I know we all have to make a living and perhaps the inspirational, life coaching and other self-help guides are a different matter; in fact I've bought and read many worthwhile books myself.

What particularly worries me is when I see an advert claiming to have beaten FM, 'I used to suffer but healed myself and you too can learn the secret' by buying their book or potion etc.

I have the best consultant I could ever wish for and if there was a way to 'cure' my FM I feel sure he would have told me and not left me in this condition.

So I'll continue my journey to ease my symptoms by whatever works for me at any given time and won't waste energy or money on 'the answer'. I'll share my experiences, good and bad, with you in my blog, and look forward to hearing what works for you and what doesn't.

Now, I'll step down from my soap box and carry on scouring the internet with my credit card safely in my purse.

My Dad always says that if it seems too good to be true, it probably is.

Stay well.

Dee

Pacing? Who me?

I'm spending today in bed!

I've had a rotten week, from the car breaking down, to my boys being 'awkward', to trouble at work; add into the mix headaches, back pains, leg pains and oh so tired! All in all I'm glad to see the back of this week.

My stress levels have hit an all time high and that alone is enough to cause a crash today.

Ok, so I can either pull up the draw bridge, shut myself away and allow the anxiety of the week to boil and fester until I am able to get up again, or I can roll with it!

I choose the latter; So what if the car broke down; I got it mended!

Hubby can talk to the boys and eventually they will understand. Together we wrote a list of the things we want them to do (or not do) like not disturbing me when I'm in bed unless there's something that can't wait until later.

I'm good at my job and can cope with the 'issues' that have arisen this week and will still deliver more than is expected of me.

Ok, so I can't do it all at the same time which was the problem this week, but by Monday everything will be rosey again and it will be service as normal.

My husband has really helped me this week; he knows that to make me laugh when I'm in the process of crashing is the best medicine I could wish for. That's what I loved about him from the beginning, his ability to make me laugh, especially in times of trouble. In actual fact we're a perfect match as when he is suffering (he has health problems including depression) I can normally bring him around, and when I'm crashing he can always pick me up. What would I do without him!

Now I'm going to indulge myself for a while with a snack, an old film, my lovely bed and some peace and quiet.

Stay well.

Dee



Monday, 29 August 2011

Fibro Fog - A Chip Off The Old Block.

My Mum being unable to recall the word she wants to use or the right name for something always makes us giggle, it's part of what makes Mum Mum. She used to get frustrated to begin with (when her ME was first diagnosed) but now she enjoys the joke too. Especially since I was diagnosed with FM and now she can get her revenge by recalling the words that I'm struggling to find. It's definately a case of what goes around comes around!

I find the more tired I am and the more I try to struggle with the word the harder it becomes. It's better to not get so heated about it and use an alternative; take a deep breath and relax and the words will come much easier.

I also use this technique when presenting at work. I will prepare my slides and then make a note of all the keywords that I shall need for each. Just knowing that I have the words at hand takes the pressure off and sometimes I don't need to refer to the notes at all. However, if I do refer to them it;s like a little kick start to urge me on.

The good thing is this symptom isn't painful; it doesn't hurt to forget a word or name or phrase; therefore, unlike some of the other more profound symptoms I can live with this one; in fact it can be quite amusing.

We often spend time when the family are throwing words at me to help me complete my sentence, and you guessed it my Mum will often hit the nail on the head. It's amost like we are on the same wave length - and actually we probably are! Although, God help us if we have a bad day at the same time!

Stay well.

Dee

Sunday, 28 August 2011

Sleeping with Zorro!

My husband and I have been away for a couple of days and I'm now really tired after a couple of days of travelling.

I treated myself last week and ordered a new sleep mask, it's made from the same stuff as Tempur beds and contours to your face. It was quite expensive but I rationalised that anything that helps me sleep would be worth it's weight in gold.

It was waiting for me when I got home so I had an afternoon nap and found it really helped.

I then used it again last night and when I woke this morning I had slept for just over 12 hours! The only thing I'm finding is that it's quite warm on my face and I do get hot flushes so this might be a problem.

It's also quite chunky which might take a little getting used to; my husband says it's like sleeping with Zorro, but if I can carry on sleeping like I did last night it will be worth persevering with.

The jury's out at the moment, but I'll let you know how it goes and whether it helps me sleep as I hope.

I'm also looking to invest in a recliner chair for my bedroom as I do spend alot of time in there and it would help not to have to spend all my time in bed; but I'm still considering my options at the moment.

Until next time, stay well.

Dee

Wednesday, 24 August 2011

Be nice to your Fibromite.

Believe it or not I can cope with the pains in my body; although not the pains in my neck and head.

However, it's the tiredness that really gets to me.

I used to be an early bird; jumping out of bed at 7am and starting that days work immediately, whether it be my job or housework. Multi-tasking was a given. I'd frequently be ironing, cooking, cleaning and helping with homework all at the same time.

I was the person (and actually still am) who you needed in an emergency. Whatever happened, however bad it got I dealt with it and my friends used to turn to me in an emergency. That's a characteristic of FM; being the first responder in times of trouble, taking control, leading from the front.

However, although I'm still good in an emergency situation because the adrenalin kicks in, I can no longer multi-task and recalling words or even what I'm doing is becomming more of a problem.

The mental stress of giving a presentation, or analysing data can now knock me flat for the rest of the day.

The most frustrating thing is the tiredness, in fact that word doesn't come close to describing how I'm feeling.

I imagine that athletes, when they hit the wall, feel how I do, yet I get the feeling by walking up the stairs, or hanging the washing out.

I'll normally wake up tired, and I'll either manage the day, or by about 11am I'll run out of batteries. It's like my body drains of energy from my head down to my feet and it can come over me quite quickly. I might be walking and suddenly drain and then it's hard to put one foot in front of the other.

It's like I'm swimming in thick mud, moving is such an effort. In fact thinking and talking is sometimes too much of any effort. My family can tell when I'm tired, because I go quiet, and things that would normally irritate me, like if one of the kids leaves the porch door open for the hundreth time today, I have to ignore, because I don't have the energy to tell them (again!).

When I'm at my most tiredest, sleep still comes with difficulty, why oh why can't I sleep when my mind and body want nothing more than this?

I feel like I'm trapped in my body sometimes, I'm so tired but my mind won't settle and I can't make any sense of the jumble and complete mess that's still whirring around in my head.

 It's at these times, that I really have to be kind to myself, I have to find somewhere quiet and comfortable, (people talking in the same room will irritate me). I normally take myself off to my room, put on my ipod (soothing music), my eye masks and the fan and try to meditate until I fall asleep. A positive focus also helps; I know this will pass!

I find the body scan technique quite useful in helping me sleep but sometimes it's difficult to focus enough to do it.

It would be really nice if someone could bring me a nice warm drink or at least ask if there is anything they can do for me. Unfortunatley, I don't have the energy to stand and make my own and talking can be the last thing I want to do so I'll often go without and wait until I feel able to do it myself, or able to ask someone for it.

It's the little things that help alot; in fact the thing that helps most is a kind word. 'Are you alright love?' 'Do you want anything?' 'How are you feeling?' They go a looooooong way, especially when I'm feeling fragile.

So for all you FM families, be nice to your fibromite, ask how they're feeling or if there's anything you can do for them? They'll really appreciate it.

Stay well.

Dee

Sunday, 21 August 2011

Top Tips & Some of My Handy Hints

These are some of the techniques I use to help me feel better. They won't work for everyone, some things you do will help me but some things won't, we're all different.

Have a comnfortable room which can be made very dark quickly, ready for the bad days.

Use a gel eye mask and / or a blackout eye mask.

Have a comfortable bed - I recently invested in a Tempur bed and it gives me the right amount of support and doesn't hurt my painful joints or tender points.

Have ice in the freezer.

Use a V pillow to get really comfortable and be properly supported.

Use wrist splints at night to prevent wrist pain in the day ( I also have carpol tunnel).

Take prescribed medication regularly but sparingly; we can become immune so have regular medication reviews.

Biofreeze spray can really relieve muscle and joint pain.

Keep a small fan handy to help relieve hot flushes.

Put your feet up but support your legs, be comfortable.

Use calming music to help you sleep (I have mine on an ipod).

Avoid foods which upset you or you are allergic to (I avoid wheat and meat).

Use meditation to relax, practicing every day will make it easier.

I keep all my handy gadgets (tablets, fan, eye masks etc) in a bag next to my bed so everything is there when I need it.

Get straight in the shower when you wake up, the warm water will loosen your muscles.

Wear comfortable clothes and shoes (don't wear heels that will hurt for the next 2 days, it's not worth it).

Have an easy to manage hair style, so you don't have to blow dry or straighten every day.

Have some me time every day - be selfish even if it's only for 15 minutes, indulge yourself, treat yourself, you're worth it!

When your bodys given up but your mind wont stop do a crossword, or something similar, to occupy your mind and let your body rest.

Pace, pace, pace and pace again. Use little boosts of energy followed by a little 10 minute rest.

Make sure you have a lunch break.

Eat healthily, but eat what you fancy. We crave sugar, so have a little treat now and again.

Be positive, this WILL pass.

What are your handy hints?

Stay well

Dee

To med or not to med!

I thought I was in for another bad day when I got up this morning, everything hurt again.

My neck, back, legs, eyes, head and toes were painful to touch. It wasn't a head ache, more of a dull throbbing and a headache warning. I also felt dizzy, and the room was moving arouond me, which was not at all nice.

I lasted until midday and then decided to take my tablets. I was prescribed Sumatriptan for the headaches some time ago. Although if you have FM you'll know that headache doesn't come close to describing the terrible pain in the head and neck that I frequently get.

The pain normally starts in my lower left neck, then spreads up and down, across my shoulders and over my scalp to my eye, cheek and jaw. I don't know what to do with myself sometimes, the pain is so bad.

When I've got the head pains full on, I can't speak or think without it hurting, the light is painful to my eyes and I just want to lie down in the dark and grip my scalp and eye until the pain subsides. I use a water bottle on my neck, a migraleve gel on my forehead, two eye masks, and a warm wheat bag across my shoulders.

However today, I noticed the warning and took one of the Sumatriptan before it got too bad and within an hour I not only felt better but I felt better than I had done for the last few days.

What a relief!

I've started using a Biofreeze spray on my muscle aches and pains and that seems to be helping too; not as quickly or as thoroughly as the Sumitriptan but more of a slow release on my aching joints and muscles.

I've heard today that another family member may well be on the way to a FM diagnosis, although it's still early days and his symptoms are similar to mine but only on one side of his body which is weird. I hope that it's not FM and that he has a full recovery, I hate to think of anyone else suffering with this horrible illness.

Fingers crossed for an all clear for him.

What other meds do I use?

Sumitriptan for the head pains (a god-send)
Amitriptyline (anti-depressant) to aid sleep
Multi vitamins
Black cohosh - for the hot flushes
Codeine - pain relief (though not very often)
Biofreeze - eases muscle and joint pain

Any more and I'll rattle.

Stay well.

Dee

Saturday, 20 August 2011

Feeling Blue

Today I feel  bit 'out of sorts'. I can't quite out my finger on it and therefore am finding it difficult to explain to you or to my family.

I don't so much a feel achy, my body isn't so much as hurting, just a bit heavy, which for me isn't so bad.

However, my mind is heavy, it's like my batteries have run out. I can't be bothered to do anything today (and there is plenty that I should be doing).

I was listening to a Johnny Mathis cd and it envoked memories which I can't quite put my finger on, but I have a general feeling of Sundays, peace and quiet, grandparents, cocktail cabinets.

I think that I've kept going too long this week as I've worked hard, I've been away all week and we have had to entertain some VIP quests. Along with this there were some problems at home which I couldn't help with and I have been quite worried about.

Now, I find that today work has finished and I'm holiday next week, and things have settled down at home which means that my mind has crashed.

I feel quite blue, not sorry for myself, just exhausted in my mind. I find myself feeling thankful for all the good things in my life.

My husband and kids, my family, my house, our finances, my job, my holiday next week, I'm very lucky in lots of respects.

These blue feelings will be short lived I know. Tomorrow I will probably be up and pottering around again, rather than lying in bed, typing my blog, and veging out.

It'll pass, it'll pass, it'll pass.

Tomorrow's another day.

Stay well

Dee

"The positive thinker sees the invisible, feels the intangible, and achieves the impossible" - Winston Churchill

Tuesday, 16 August 2011

Fight or Flight!

More research is need into the area of our fight of flight reaction.

I was told that most of my FM may have been caused because I am a 'guardian', I am great in an emergency in fact I perform better when under pressure.

Back in pre-historic times I would have been one of the guardian or protectors of the tribe. I would be on watch, on alert for any threats or dangerous situations.

Thinking about it, I've always been a 'what if' person. I can vividly remember walking home late from school in the dark, planning what I would do if I was attacked. I would have a plan of action in case somebody jumped out on me. I would carry a key in my hand as a weapon to buy me time, I would run and knock on the first door I could find which had a light on.

I've always planned for the worst case scenario; what would I do if I crashed the car, was mugged in the street, suffered the death of a close family member, etc, etc.

The part of my brain which prepares my body to fight or flight has gone into overdrive and now I can't switch it off; which is partly why I have difficulty sleeping.

Furthermore, I want to do everything myself, because then I can be sure that it's done to my satisfaction. I'm a control freak!

I can't say no. My employers over the past few years have demanded more and more of me. Every time they have given me more to do I've done it. I have raised their expectations of me so much so that I can't sustain the same level of 'over working' - I'm burnt out.

Thats' not to say that I'm not continuing to do a great job, it's just that I've had to retract my boundry to that of a 'normal' person. I'm learning how to do a great job but still be able to draw a line.

These are some of the things I am trying to address by reading the books recommended to me by my consultant; I'm learning to meditate to relax - I am re-educating myself.

This is the part of FM which interested me most, why are people with these characteristics more likely to suffer from FM?

Interesting stuff!

Stay well.

Dee

Monday, 15 August 2011

Hot Stuff

Todays' blog focuses on temperature control or lack of it.

I used to be cold all the time, my husband used to like the window open all night and never slept under the covers; while I was wrapped in thick pyjamas with the quilt tucked in around me.

But now, I have to have the window open and the fan on high all night. I can't stand the covers over me and only use a cotton sheet.

Recently, my Doctor has taken me off of HRT as I had been on it for 13 years since I had a full hysterectomy, so I'm not sure how much can be attributed to 'the change' and how much is the FM. I suppose it's both.

Sometimes I get wave after wave of flushes and it's always at the most inconvenient time like when I'm with a customer or in the middle of the night. I don't just feel hot; my face and neck go bright red, my palms become clammy and my hands and feet swell up.

What do I do? I've started putting a sheet under the quilt so that I can take the quilt off in the night and as I mentioned I have a fan in the bedroom which is a life saver. My husband also had my wedding ring made one size larger because I couldn't get it on or off.

I also find that I often have a very dry mouth, in fact I stopped taking Chlonidine which my Doctor gave me for the hot flushes because my mouth got so dry my tongue was sore.

I also keep ice cubes in the freezer all the time and drink lots of cold juice.

I need to get myself a small handheld fan and a cool spray to keep handy; they're on my next shopping list.

I'd be reallly interested in anyone elses techniques for keeping cool.

Anyway, bye for now.

Stay well.

Dee






Sunday, 14 August 2011

They just don't get me.

I've not been sleeping at all lately. Of course I never sleep well and have to be strict about bed times and routines regardless of how sleepy I am.

I often find that I go to bed feeling absolutely exhausted but I can't sleep. My mind is whirring about mostly inconsequential stuff. I get annoyed with myself because I'm worrying about things which are beyond my control and I have to give myself a good talking to, often in the middle of the night, because I know I'm wasting energy.

So when I got up this morning feeling more unrefreshed than normal and found that dishes hadn't been cleared away from last nights dinner and the freezer door had been left ajar so that it had frozen all over the door and would no longer close properly, my mood dropped considerably further. I could feel my head beginning to hurt and pain in my neck flared up again.

I cleaned the kitchen and defrosted and cleaned the freezer and by the time I sat down to have my breakfast I knew that I had used all my energy for the day (I'd run out of spoons).

When my youngest son (19) got up and noticed I had the hump he asked what was wrong and we were then joined by my oldest son (21) so I decided that I needed to explain.

I'll admit that I didn't do a very good job as I'm painfully aware that they're probably not interested in why Mum's not feeling good again.

So the chat went along the lines of 'you two don't ever volunteer to help me with anything, you only do something when you're specifically asked, you need to offer to do things and not cause more work for me.' And then the sentiment that has probably been said by every parent that's ever lived; 'this isn't a hotel, you don't have a maid clearing up after you, you need to think about what you're doing'.

I shouldn't have said these things but then I shouldn't have felt like I needed to either.

My problem is that the boys don't get me, they dont understand and probably don't even want to. I don't want them to remember their last few years at home as being hard work or unhappy but on the other hand is it really too much to expect them to help around the house sometimes?

I think this is a long battle and I'm not sure I can be bothered to fight to be honest. My husband normally does a good job of running the house as he works from home but this week he hasn't been well and therefore things have drifted. It has really highlighted how little the boys have been doing.

Oh well, hopefully they will think about what I said, although I'm sure they will need to be 'reminded' quite frequently.

Time will tell.

Stay well.

Dee






Saturday, 13 August 2011

Hairy Moment

Before I begin todays blog, let me just tell those who have been following that my plans went awry this morning. There is a local support group which meets every second Saturday of the month and I went along to my first meeting this morning.

However, other than one other newbie, no-one else was there. It must have been moved or cancelled for some reason so I'm having to contact the organiser (I only have an email address) and find out when the next meeting is.

I am a little dissappointed as I was hoping to establish contact with other fibromites, hey ho! there'll be another chance next month hopefully.

Anyway, todays blog is about one symptom which has reared it's 'ugly head' (exscue the pun) just a couple of months ago. I noticed a small bald spot on my head when I was drying my hair.

I've seen comments about thinning hair being attributed to FM but only one other post about a small patch of hair loss.

It started about the size of a 10p coin and is now somewhat larger than a £2 coin.

All around the patch the hair is pure white, not grey, but very white.

My hairdresser says that it's quite common and so may not be atributed to FM, perhaps just a coincidence.

I'm lucky in that I have very thick hair, so I've had te length cut to just above my shoulder and my hairdresser has given me a regular peppermint treatment as stimulating the scalp with a massage can sometimes help hair regrowth.

My first reaction was shock and I musr admit that I was quite frightened that I might lose all my hair but I've since come to terms with it.

In fact out of all my symptoms it's probably the one that concerns me least. It's not adding to my physical symptoms; it doesn't hurt or ache. Even if the worse happens and I lose all my hair (which I don't think will happen considering the loss has been quite a slow process) I'll cope!

I don't mean to be flipant, I know for some people with true alopecia it can be extremely upsetting, depressing and life changing. It's just that where I'm at, with FM and a smallish bald patch, I haven't got the time or the energy to worry about it.

I'm going to lay down in front of the TV for a while now - look at me pacing myself!

I hope my fellow fibromites are all having a pain free day.

Stay well.

Dee



Friday, 12 August 2011

Support Group Tomorrow

Hi there

My word, I'm tired today! Had to drive a 250 mile round trip and the traffic was terrible. It's funny how I can drive for miles and regularly do, but I don't normally find it too difficult.

Sorry I missed yesterdays post, have been trying to recoup following a busy week.

Today I've received my first edition of the the UK Fibromyalgia FaMily Magazine which I'm reading with interest. (http://www.ukfibromyalgia.com/family-magazine/family-magazine.html)

I'm also going to my first support group tomorrow, which I'm really looking forward to; I'll let you know how it goes.

In the meantime I wish you all the best.

Stay well.

Dee

Wednesday, 10 August 2011

The more I tried the more difficult it became.

I've been trying to analyse some figures which even in my 'normal' days would be quite complex but I'm normally quite good with stats.

However, being exhausted and foggy meant that the more I tried the more difficult it became.

I should have walked away, but knowing I have an imminent deadline meant that I tried harder and ended up crying in frustration. I would have shouted but I didn't have the energy!

Not only could I not understand the stats but they looked all jumbled, they made no sense at all; just looking at the numbers hurt my head.

I ended up taking an hour break and managed in the end to do about half of what was needed.

I know it's no good doing any more because I physically ache all over now and my wrist and neck hurts and my eyes are puffy and blurred and I'm very irritated.

I can hear the family in the other room and they're getting on my nerves - bless them, they're not doing anything but they're still irritating me.

I'm not going to hope that I feel better tomorrow because that will put pressure on myself so I'll just see what happens tomorrow.

I'll be able to do them sooner or later.

For now, I'm going to take a big bag of chocolate to bed and relax in the peace and quiet of my own room.

Sorry kids, you know I love you!

Stay well

Dee

Tuesday, 9 August 2011

If it's worth doing, do it yourself?

There were times when I didn't stop - whatever needed to be done got done by me! My principle was 'if a job was worth doing do it yourself!' I used to regularly work 12 hour days then come home, cook dinner, clear up, tidy the house, look after the two kids, help with homework, do some washing and then prepare my work for the following day without batting an eye. Not any more.

Luckily for me I remarried and my husband and kids do their share, the kids are all over 19 although still at home.

I very rarely do any housework now, I have to keep all my energy for my work.

It's not all plain sailing though, my husband does forget sometimes how much help I need, partly because I don't look ill and partly because he has alot on his own plate too.

However, as the main income I have to protect my job and make sure that the FM doesn't reduce my efforts at work.

We have our moments but generally speaking I'm very lucky and grateful to have the support of my family.

Having had a busy two days I'm now feeling slower and thinking is a more difficult process. The fibro fatigue is definately back and how!

Putting these words together is a struggle as you can probably tell. My head feals like it's full of cotton wool, but I know if I were to lay down (which I will soon) I won't be able to sleep.

I didn't sleep well last night, I was waking up every hour with a start - wide awake; it was a very fitfull sleep and not refreshing at all.

This means that my concentration level is very low and I'm a bit snappy because I don't have the energy to help people understand how I'm feeling. I know it's irrational because if I can't explain they can't understand, so it's my fault.

Anyway, the good thing is this, like all the other symptoms, will pass. I know that in a day or two (providing I'm sensible) I'll feel better.

Sensible, means not sitting at the pc late into the evening, going to bed early (even if I can't sleep, I can relax), eating healthily, taking my meds (which I missed last night) and not worrying about tomorrow or anything else for that matter.

I'm learning to meditate and body scan at the moment although I'm a bit impatient, which is never a good way to start meditating; but I'll persevere with it.

I'm also finding the writing of my blog very therapeutic, it's a release, and whilst I don't want to wallow in FM I do have a need to understand and share.

There are lots of little things which I've found that help me, like I wear two eye shades when I sleep, one is a gel which applies very light pressure to my eyes the other is to shut out the light which I find extremely disconcerting and painful when I'm in the midst of a migraine.

I also alternate between an ice pack and a hot water bottle for my neck and face pain. I get extreme pain in my jaw and face, sometimes if I can sleep the hot water bottle helps, if I can't sleep I'll use ice to relax the muscles of my neck.

It's these little things that I get most help from and would be interested in hearing any small techniques you might have come up with which make a big difference to your FM.

I think I've rambled enough for today, speak again soon.

Stay well.

Dee



Monday, 8 August 2011

Oh Oh! Fibrofog Forecast!

I've tried writing todays blog 3 times and I can't find the words or the subject and my minds tired.

So for today, I'm afraid I'm giving in for a little while. I'm not defeated just recharging.

Will try again tomorrow.

Stay well.

Dee

Sunday, 7 August 2011

No Miracle Cure

As much as I was astounded by the accuracy, understanding and empathy shown by my consultant there were no answers. No medication to 'cure' me, no miracle remedy.

When I asked what he suggested the first thing he asked was whether I really had to work? Yes, I do, there's no question of me going part-time even, so that wasn't and still isn't an option.

However, he did start me on a journey to discover for myself what helps me most.

Firstly, because of the IBS symptoms he recommended avoiding meat and wheat. Easier said than done! However, having drastically reduced my intake of both I can now tell when I've succumbed to a little chicken or bread. The stomach cramps, bloating, diahorrea and or constipation returns the next day like a punishment. A warning that works, because I always try to avoid meat and wheat where I can and I do feel the benefit most of the time. Although, I still need the loo frequently.

He also suggested that I start researching FM. He recommended four books although there are alot of publications to choose from but he told me where to start.

The first book was called Self-Help For Your Nerves by Dr Claire Weekes.

Its a small book and is easy to read - I devoured it. In fact because I often read last thing at night and my concentration is not too good, I made myself some flash cards with pertinent notes, comments and hints on. I use these to remind myself when things feel bad.

This book introduced me to floating. Imagining myself doing something which I'm finding difficult, such as getting dressed when my head is hurting. The idea is to imagine yourself floating through the steps of getting dressed...... I'm not good at explaining things but if you're interested this is certainly a good book to start with.

I believe that my FM was caused by a prolonged stressful period of my life and therefore have to really try hard to manage my anxiety and stress levels and the tips in this book really help.

You could have called me a work-a-holic which I think exacerbated my FM and although I still have to work and I do really enjoy my job I try to keep my work-life perspective more under control. I've let go a little!

I used to be a worrier. I worried about everything, my kids, my work, my work affectuing my kids, money. You name it and I've worried about it. In fact, if I had nothing to worry about I'd worry that I had nothing to worry about.

My husband often says that he wishes I could be more easy going, more relaxed, just roll with the punches. That's my living nightmare; I like to know in advance whats happening and I like to plan for everything. I don't like plans changing at the last minute and I don't like being unprepared. This is something I'm still working on. Although I'm taking little steps forward; tomorrow I shall be giving a presentation to a large group of people without any notes. That will be a first for me!

Anyway, I'm on book two at the moment but I'm struggling with it as it is a heavier book, both in weight and content. I'll let you know how I'm getting on as I get through it, but it may take some time.

Great news; my husband and my youngest son both want to come to my local support group with me next week. They're keen to understand what I'm going through. This will be my first visit so I'm looking forward to it, although I am a little anxious; nothing new there then!

Well that's todays blog; I hope you're enjoying it. I'd love to hear more of your comments.

Stay well.

Dee

Saturday, 6 August 2011

Just one question!

Today is Saturday, and for once I've woken up feeling almost human, it's a 8/10 day today (10 being great, and 1 being unbearable).

I was telling you about Mr Llewellyn, everyone told me about how nice he is before I met him. I remember feeling that it was a bit strange as all the nurses kept saying what a lovely man he is.

I went to the hospital thinking that I must make the most of this long awaited appointment; I went armed with a list of symptoms. They were a strange mix to say the least and I was worried / anxious that no-one was going to take me seriously.

My list contained the following:

Headaches and migraines
Neck pain
Nausea and diahorrea
Dizzyness
Blurred vision
Extreme tiredness
Unable to exert myself
Regular swollen glands
Itchy, sore throat
Disturbed sleep
Anxiety / stress
Muscle pains / aches
Going to the toilet frequently
Stomach cramps
Heartburn
Difficulty recalling words
Low concentration
Weight increased

Reprinting this list here doesn't explain how each of these things really affect my life. For example I used to be a morning person; I would bounce out of bed and be up and at it straight away. I used to be able to do all the housework in one morning and then would go shopping and go out in the evening. I can't do any of that any more. When I wake up it takes me about 10 minutes to be able to open my eyes and 'come round'. I then sit on the edge of the bed for a couple of minutes before getting in the shower; that's when I can tell what sort of day it's going to be.

So it's not just that I'm not as fit as I used to be, or that I'm getting older so am having to slow down a little (I'm 44). It's that my body / my muscles have given up.

Anyway, what I wanted to say is that My Llewellyn asked me one question and then proceeded to tell me what my symptoms are. He got everything on my list (without seeing it) and some that I hadn't even recognised until he mentioned them.

He asked me whether my tiredness or my muscle pains were the worst symptom. If he could rid me of one symptom which would I choose? I told him the tiredness and from there he told me how I was feeling.

My husband and I were astounded at how acurate he was; he described me to a T.

It was such a relief to finally find someone who believed in me and understood how I felt that I was almost dumbstruck; just trying to remember every little thing Mr Llewellyn said as I knew that I would need to understand everything to come to terms with FM. I am a curious person and I have a yearning to understand everything; to really know how and why something works or doesn't work in my case.

This was the start of a very long journey and I'm still only just a few feet up the road but I still have one thing that will never be drained by FM - hope. It may not be much but it's helping me at the moment so let's go with it!

Now, while I'm feeling 8 I'm going to make the most of it and get some retail therapy.

Tara for now.

Stay well.

Dee

Friday, 5 August 2011

I wasn't going mad after all!

I don't think I've felt 'well' for such a long time'. So tired that I sometimes I couldn't talk. My husband and kids began joking that Mum was always poorly, always had something wrong with her.

Finally, I went to the Dr's because I felt like I was loosing my mind. My body hurt; if I wore new shoes my feet hurt. If my jeans were too tight my waist hurt. I couldn't walk for more than a few minutes. I always needed to go to the loo and when I got really tired I couldn't focus my eyes. Something wasn't right.

My Mum had suffered badly with ME when she was my age and I began to have a terrible suspicion that I had something similar. Although, Mum never had as many different symptoms as I had. Perhaps it was just post-viral fatigure my Dr told me. However, following an array of normal blood tests she finally decided to refer me to Mr Llewellyn at the Royal Gwent Hospital.

I spent and hour and a half with Mr Llewellyn and it was the best hour and a half I've ever spent. Not because he gave me medicine that cured me because he didn't, it doesn't work that way. But he did explain everything to me and I began to understand and eventually cope with Fibromyalgia.

I wasn't going mad after all!

My blog is not intended to offer suggestions for coping with FM, it's just my way of learning to manage it for myself. Sometimes it's quite a lonely place to be and if someone reading my blog can feel less alone and a little less stressed about their own symptoms then that's great! I'll try not to be indulgent and I certainly don't want to wallow in self pity. I just want to share my experience, that's all.

I've got so much to say and I'd love to hear from anyone in a similar situation. Have I mentioned that I'm still working full time? I'm managing my week very carefully and am quite proud of my achievements. I'd love to know how other workers are coping too.

I can't promise to blog regularly as I have to be in the right frame of mind and energy but I'll do my best.

Take care and stay well.

Dee