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, 1 June 2013

Frustrations

Hi All,

Sleep: 5
Pain: 4
Migraine: 2
Fibrofog: 4
IBS: 1
Tiredness: 4

(1 = minimal, 5 = chronic)

This week Mum is very frustrated because as the nice weather makes an appearance she really likes to potter in the garden and spend time outside but as you will see from this week's rankings she is struggling a bit and too tired to make the most of it.

This is a shame, although mitigated slightly by having her wheelchair.  This means that providing she has plenty of support she feels able to go to the zoo with my Dad, their two year old granddaughter and me tomorrow.  However, the chair can only go so far and it is still really hard work for Mum.

Does anyone else feel frustrated about not being able to make the most of the lovely weather?

Mum also watched a really interesting program on BBC Week in Week Out this week called "Wales in Pain" which was primarily about people addicted to pain killers but also details a lady who suffered from FM - she went from being bedridden to preparing to hike up Snowdon Mountain as a result of staying at a chronic pain clinic called "Pain and Fatigue Management Centre" located on the Bronllys Hospital site.   NHS doctors resist sending people to this clinic because of the cost.  It was a very captivating program.

This is on the BBC I-Player for anyone interested.

Hope everyone has a good week.

Best Wishes,

Dee and Amy 

Sunday, 5 May 2013

A good week!

Hi everyone,

Sleep: 2
Pain: 2
Migraine: 1
Fibrofog: 3
IBS: 2
Tiredness: 2

(1 = minimal, 5 = chronic)

As you can see, for Mum this is a really good week.  This is especially because Mum has had a lot of work and travelling on this week, along with some high pressured meetings to attend.  A lot of this has involved being away over night (3 nights out of 5) so having a good week despite all of this is even more of a bonus.

Mum is now on her third week of some new tablets from the doctor, and is hoping that this good week could be the product of that.  Although its hard to tell because obviously there are good weeks and bad weeks.

The new tablets are Sertralene 50mg - these are anti-depressants which were prescribed because Mum has a problem with clenching her jaw at night which is causing her headaches.  The doctor suggested these tablets but in such a low dose that they are commonly used to help disturbed sleep.

Another thing that has contributed to feeling quite good this week is that my Dad has been taking the pressure off of Mum a lot.  He hasn't gone overboard but has done a lot of little things that are making a big difference - doing the laundry, cooking dinner a few nights of the week and being generally thoughtful and caring.  This has made a really big difference and been really nice - supportive friends and family can improve things a great deal; sometimes without even realizing!

We hope some of you have had a good week too?

Here's hoping that the bank holiday is sunny as forecast - hoping everyone has a lovely day off.

Best wishes,

Dee and Amy


Sunday, 14 April 2013

Living or Coping?

Hi All,

To start, as usual:

Sleep: 5
Pain: 3
Migraine: 1
Fibrofog: 3
IBS: 2
Tiredness: 5

Dee writing this week.

I've had a very busy work week and so have been away from home most of the week.  Spending so much time with my colleagues meant that I had the opportunity to explain about my Fibro.

On my return home I felt the need to do some more research to see how other people cope and if there is any more than I can do, or things I'm not doing that I should be.  I came across a Facebook page which asked the question "Are you Living or Just Coping?"  Having given this a lot of thought I've decided that I go from one to the other.  When I have a flair up I revert to coping, and as it passes I start to move back into the land of the living.

One thing I really have to thank my husband for is that he will never let me just settle.  When I'm feeling just "ok" it can be very tempting to accept that, but he will always push me to want more than that for myself.  He doesn't drag me into this, but is really encouraging.  Although half the time he doesn't know he's doing it! 

The Facebook page I found encourages us to look at the resources we have, in order to see the resources we need.  These resources we have are those that we fall back on when we are just coping.  For me they are my supportive family, my strength of character, my understanding doctor, and a job that I love.  The resources that I need are less clear to me, which is why I'm researching more this week.  However so far I have identified exercise that I can commit to and is achievable, finding a support group and increasing my meditation.  Although I am realistic that there are other things which I haven't thought of yet.

I'd be really interested to hear from anyone who has set goals of their own, and how they might have achieved them?  I'd also really welcome advice on how to set about achieving my own objectives!

Have a good week,

Dee and Amy

Saturday, 6 April 2013

Have Wheels, Will Travel

Hi,

To start; this week's ratings:

Sleep: 4
Pain: 3
Migraine: 5
Fibrofog: 2
IBS: 4
Tiredness: 5

As you can see, for Mum this week has been a bit of a doozy.  She's been out of her normal routine due a week's holiday from work.  The week started with a mini break to Oxford, but unfortunately Mum feels like gradually as she has relaxed she has declined into a "dude" (her words) of a migraine which lasted all day Saturday.

However, whilst in Oxford and struggling to manage even twenty minutes of wandering around antique shops (and never one to be put off shopping for long) Mum had a brainwave.  Dad arranged for them to rent a wheelchair so that she could manage to spend the day mobile but not exhausted within a few minutes.

It proved to be a hit; they managed a good few hours of wandering around shops and Mum managed to both be out for a period of time and to enjoy herself; as shopping and related activities can be very difficult when Mum can't manage to walk around for long at all.  The chair was such a success that they've bought one to keep in the car, we are really hoping this will improve the quality of time Mum can spend out and about.  This is especially since we in Wales have had what feels like the unprecedented luxury of two vaguely sunny days in a row.

Perhaps anyone else has tried a chair or other ways of managing getting around more comfortably?

Mum is hoping the chair is temporary, and is quite concerned that she could become reliant on it.  Does anyone have any advice for her on that?

As for me, when the chair arrive my brother and I attempted a wheelchair obstacle course around the house - trying to get into the kitchen and to the front door without crashing.  Much easier said than done, but I am the proud winner.  We have a lot more respect for people that use these chairs on a daily basis - although its helping Mum a lot, they're still not at all easy to manoeuvre.

Have a good week, and let us know your thoughts.

Dee and Amy

Saturday, 30 March 2013

Week 1 - driving, driving, driving

Dear Everyone,

Amy here again.

This week's ratings:

Sleep: 3
Pain: 2
Migraine: 1
Fibrofog: 4
IBS: 3
Tiredness: 3

(1 = minimal, 5 = chronic)

This week has been predominantly spent in the car.  A long journey to Lincolnshire to visit my Grandparents (Mum's parents) which Mum drove the majority of herself meant she spent a great deal of time in the car and had to deal with the associated aches and pains.

You'll see from our ratings that Fibrofog has been a problem for Mum this week.  I've noticed a lot that she's really pulling for her words, and for her its like two words have moulded together and in her mind she has to separate them out before she can say them.  As a family member, I haven't been sure whether its best to prompt her with the word she might be looking for to help her out or let her think of something herself and speak on her own.  She tells me she doesn't mind us trying to help her out a bit because she can't move on until she has the right word that she's trying to get at. 

Fibrofog was a very big problem during work for Mum this week as she was in meetings and struggling to come up with the word she was looking for.

Although its undoubtedly frustrating for Mum to be searching for the right word it does have funny consequences from time to time.  Recently she was in an important meeting with her colleagues and superiors when she was trying to read out the word "content" but couldn't manage to voice the word.  Unfortunately, the word she did manage to blurt out did begin with "c" but ended with "unt" and caused a mixture of suprise and hilarity amongst her colleages!  Embarassing for Mum but when she came home and told us we could barely stand up for laughing so much - luckily she saw the funny side too!

Does anyone else have lots of problems with Fibrofog?  Any tips?

Have a good week,

Amy and Dee.

Introducing Amy

Hi Everyone,

I'd like to introduce myself - my name is Amy and I am Dee's 22 year old daughter.  You'll see there haven't been any posts for a while and that's because I'm sure you can imagine managing a blog on top of all of the other things my Mum tries to keep on top of is often too much.  Therefore, we have decided from now on to do the blog together because we both think it's important not to let the blog slide.  So once a week Mum is going to talk to me and I'm going to put it down as a blog post - I hope this is ok!

Also, we're going to do it a bit differently - we're going to track and rate how Mum feels and her different symptoms every week; with a bit of luck it will help us as a family identify triggers and patterns and also things that help ease certain symptoms.  You never know, some of the things we talk about might ring a bell with you or a loved one - its surprising the difference little things can make.

Every week we are going to rate sleep, pain, migraines, fibrofog, IBS and tiredness out of 5.  1 being minimal, and 5 being chronic.  We're going to try and compare this to what Mum has been up to this week and could therefore have triggered it - whether she has been travelling a lot with work or under a lot of stress in other ways.  Then, we'll talk about what Mum has done to try and combat this and how successful it was.

As Dee's daughter, I hope that this weekly journal will help us as a family understand better what affects Mum's FM and what we can all do to help alleviate this.  As a house full of adults we should be better placed to empathise, but I'm sure sometimes we are too wrapped up in ourselves to see the potential affect our own behaviour has on Mum and her FM.

I hope this makes sense!

Thursday, 17 January 2013

Weather and FM

I can remember my grandparents complaining that the weather exacerbated their ailments and can also remember dismissing the comments as moans and groans.

However, I posthumously apologize to them, now that I've reached the age where I completely understand what they meant and can truly 'feel' their pain. 

Not only do I 'feel the cold' more than I've ever done but my bones actually ache.

I suffer with myofascial pain in my jaw which triggers at any time but particularly when its really cold.

I also find the muscle pains throughout my body heighten when its cold.

So my shopping list for the weekend includes a snood and I'm wrapping up warm and snug as a bug!

Now all I need to do is stop the hot flushes! Life's so complicated :-) 

Stay well.

DeeDee

Wednesday, 16 January 2013

Lucky Break

I haven't written for a while, I've no excuse, I just dont know where the time has gone.

However, I want to start the year on a positive note

I  don't want to jinx myself so I'm not going to say that I've seen an improvement in my FM, I'd rather say that my FM is different!

I haven't had so many headaches, and those that I have had are not as severe generally speaking.

I still have the extraordinary tiredness but I'm coping well with it I think.

Also, I'm not made bedridden by a slight cough or cold.

The thing I can't quite understand is whether I have actually felt better or whether I've just been too busy to be  ill. Perhaps its a bit of both?

How much does my state of mind affect my FM?

I know that if I have an important meeting at working I can cope, but the minute I know I can relax I crash! For example, I worked flat out up til Christmas, both at work and at home, but as soon as the Christmas lunch was over I had a rotten cold come on and last right through the Christmas break!

I don't get it! Its not a conscious decision, I can't choose when to cope and when to crash but I can predict when it will happen because the pattern is clear. This makes me wonder why I can't control it better. I know that I'm ill every Christmas and sure enough I am, so why can't I influence it?

My family always tell me that I over analyze everything so perhaps that's what im doing, but I can't help but wonder....