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.
Saturday, 30 March 2013
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!
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....
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....
Sunday, 15 January 2012
Just when I thought I was getting somewhere.......
It was going too well!
I really thought my loved ones understood! I've tried to walk a fine line without bleating on about myself all the time but also explaining to those around me what was happening and why I can't do what I used to do.
Until yesterday! I spent most of it in bed, trying to meditate and then sleep. Sleep is so precious to me, it's so difficult to get and then all of a sudden there were doors banging, the boys were talking and laughing and I'm awake again.
The problem was I went straight to them and explained where they had gone wrong and yes, I'll admit I was curt, and if I'm honest too forthright. I should have waited until I was properly awake and calm.
However, the reaction I got goes to show that they don't really understand at all.
It's made me realise what I need to do. Firstly, hubby needs to take control of the house, keep things moving, stay organised because I don't have the strength to do this along with my job. I can't give up my job so I need more help in other areas.
Secondly, I need to relax more, learn to meditate better and reduce my stress levels. Not everything is as important as I think it is, I need to let go of the less important things and save my energy.
But, those around me do need to take responsibility for themselves rather than relying on me all the time. They are all grown up after all.
Ok, end of rant. Sorry this isn't my normal positive outlook, this weekend has been very trying but I'm not out just a little down. Tomorrows another day and I'm sure it'll be far better and more productive.
Onwards and upwards!
Stay well.
Dee
Sunday, 1 January 2012
New Year - New Hope!
Wow, how time flies! I didn't realise it had been so long since I last blogged, I really need to get better access, I am trying to get a new laptop as I only have a business one which I don't like to use for personal stuff.
Anyway, I will make more of an effort to record my experiences as it's quite therapeutic and I should indulge myself a little more.
I managed the whole Xmas break with only one bad day! I hosted Xmas and had my parents staying which was absolutely fantastic. However, Xmas is always a stressful time for me as I like to make sure everyone has everything they need and all the trimmings are taken care of. I had alot of help this year, the kids did the decorations and my hubby did alot of the preparations and my parents helped while they were with us too. It was lovely, but I am now enjoying a slower pace and a more relaxing couple of days before going back to work.
I'm feeling quite positive too, financially we're not in a bad state considering it's January and I am more able to cope with my new job as I've finally got some experience under by belt. This year we are going to focus on decorating the house as we haven't done much to it since we moved in 4 years ago.
I've learnt my limits and although sometimes I do still push myself to the max, I generally know when to stop.
This year I am feeling grateful for what I have; my husband, my family, my friends, my job, my life!
It could be so much worse, I am a very lucky person.
Stay well
Dee
Anyway, I will make more of an effort to record my experiences as it's quite therapeutic and I should indulge myself a little more.
I managed the whole Xmas break with only one bad day! I hosted Xmas and had my parents staying which was absolutely fantastic. However, Xmas is always a stressful time for me as I like to make sure everyone has everything they need and all the trimmings are taken care of. I had alot of help this year, the kids did the decorations and my hubby did alot of the preparations and my parents helped while they were with us too. It was lovely, but I am now enjoying a slower pace and a more relaxing couple of days before going back to work.
I'm feeling quite positive too, financially we're not in a bad state considering it's January and I am more able to cope with my new job as I've finally got some experience under by belt. This year we are going to focus on decorating the house as we haven't done much to it since we moved in 4 years ago.
I've learnt my limits and although sometimes I do still push myself to the max, I generally know when to stop.
This year I am feeling grateful for what I have; my husband, my family, my friends, my job, my life!
It could be so much worse, I am a very lucky person.
Stay well
Dee
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
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
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