Having FM means that I often have to sit or lay down and it's during these times that I think. I think too much!
I wonder how much of my pain I could have avoided if I'd done things differently when I was younger.
What advice would you give to your younger self? What advice would you give to a friend if she were in your shoes.
Here's what I wish I could have said:
1. Face your feelings, don't block them out.
I used to throw myself into work to avoid having to think about the horrible situation that I found myself in. I kept myself busy, so I didn't have to think. I either put the kids first, or my job, because if I thought about myself I couldn't cope, so I avoided that.
2. Be selfish (a little).
I used to be so busy looking after everyone else, that I completely forgot that there were things I needed. I used to eat whatever was left. I never 'chose' what I wanted to wear or buy. I went along with everyone else. I bought myself the cheapest, easiest things to get. I don't want to sound like a saint, far from it, but I just didn't ever think about me.
3. Just be.
I never used to like my own company, this goes back to being selfish really. I think it was the silence I didn't like, because when it's silent you can think, and that's what I was trying to avoid. So my advice would be to love yourself and your own company. It's often said that if you can't love yourself how do you expect others to love you. I even went as far as turning the car radio on loud so that my brain was unable to focus. I know; crazy!!
4. If you're ill, you're ill!
Perhaps it's a woman thing, but I would never take any time to be ill. I even used to take my laptop to bed when I couldn't lift my head off the pillow. I thought it was good to struggle on, persevere, be the martyr. So foolish! I would never do this now, not even if I could.
5. Stop and look around.
Life was so busy, busy, busy! In my effort to block things out I lived life as fast as I could, and now I'm 51 and life has flown by. So I would say, slow down, take time to live in the moment.
I can't take the credit for this as I attended a mindfulness course (John Kabat Zinn inspired). I highly recommend his mindfulness books, this one in particular Full Catastrophe Living Jon Kabat-Zinn available from Amazon.
Don't go on automatic pilot, live every moment, taste the food, feel the sun, smell the coffee (lol).
Isn't hindsight a wonderful thing........ Be strong and keep smiling.
Comment below the advice you would have given to your younger self.
Full Catastrophe Living by Jon Kabat-Zinn available from Amazon.
Thursday 28 June 2018
Thursday 22 June 2017
Ok, so not such a good idea after all!
They say to trust your instinct, your gut feeling. I know my body better than anyone else, or so I thought.
Last week I ran out of one of my tablets; sertraline. I was worried at first, but I forgot to organise my repeat prescription and then when I did order it, I forgot to pick it up, and then the weekend was upon me.
But, hang on, I went for about 6 days without taking sertraline, and didn't feel any different. May be I don't need them, I thought. May be I was taking them unnecessarily, I thought. May be I could do without them, I thought.
Yes, I overthink everything, I analyse, scrutinise, logicasize (is that even a word?), think, think, think, over and over. What if, what about, how come, how about, perhaps it's this, perhaps it's that. I can find a logical reason for everything, I drive myself mad.
Anyway, back to the reason for this blog; sertraline.
So yes, I know my GP would have advised otherwise, but I decided to try to do without them.
That was the worst decision I have made in a long, long time.
I stopped sleeping, but I blamed the heat, my joints flared, but I blamed the heat. I felt like everything around me was swaying, perhaps my sugar levels had dropped, I THOUGHT!
Today, I gave in and started taking Sertraline again.
My joints haven't been this bad, this long, for quite some time. I'm not sleeping, in fact I'm only dozing, and when I doze I have nightmares, and am dreaming that I'm tryin to wake up but I can't. I need to wake up, but I can't come round. Then I dream I'm awake, then realise in my dream that I'm still asleep; my very own ground hog day.
So I've restarted Sertraline, and am hoping they kick back in quickly. Never again will I doubt their efficacy, never again will I stop medication by mistake or purposely, without consulting my GP first.
Lesson learnt!
Last week I ran out of one of my tablets; sertraline. I was worried at first, but I forgot to organise my repeat prescription and then when I did order it, I forgot to pick it up, and then the weekend was upon me.
But, hang on, I went for about 6 days without taking sertraline, and didn't feel any different. May be I don't need them, I thought. May be I was taking them unnecessarily, I thought. May be I could do without them, I thought.
Yes, I overthink everything, I analyse, scrutinise, logicasize (is that even a word?), think, think, think, over and over. What if, what about, how come, how about, perhaps it's this, perhaps it's that. I can find a logical reason for everything, I drive myself mad.
Anyway, back to the reason for this blog; sertraline.
So yes, I know my GP would have advised otherwise, but I decided to try to do without them.
That was the worst decision I have made in a long, long time.
I stopped sleeping, but I blamed the heat, my joints flared, but I blamed the heat. I felt like everything around me was swaying, perhaps my sugar levels had dropped, I THOUGHT!
Today, I gave in and started taking Sertraline again.
My joints haven't been this bad, this long, for quite some time. I'm not sleeping, in fact I'm only dozing, and when I doze I have nightmares, and am dreaming that I'm tryin to wake up but I can't. I need to wake up, but I can't come round. Then I dream I'm awake, then realise in my dream that I'm still asleep; my very own ground hog day.
So I've restarted Sertraline, and am hoping they kick back in quickly. Never again will I doubt their efficacy, never again will I stop medication by mistake or purposely, without consulting my GP first.
Lesson learnt!
Friday 24 February 2017
Fibro frustrations and chronic pain circles
You know the feeling when you just don't know where to turn? Well, recently I found myself stumped for ideas, without any direction and still feel that I have no idea what to do next.
My surgery is one where it's unusual and unlikely to see the same GP twice. However, I have started insisting on seeing one particular GP. Not because I'm getting the help and support that I need, but because I feel it's the only way for them to get to know me and to learn that I'm not malingering.
So that's my first fight every time I ring the surgery.
Having seen this GP a couple of times, I must admit I got quite emotional on a recent visit. I tried to explain that I didn't feel I was receiving the treatment or support that I needed. Her response, perhaps naturally, was to become defensive. Which in turn made me more emotional.
So that's my second battle; trying to explain exactly how I feel without getting upset or angry, which in itself is difficult because cognitively, I'm unable to communicate as eloquently as I used to, thanks to the dreaded fibro fog.
However, on this particular occasion I had prepared a list of all the things I had tried since my diagnosis around 7 years earlier. This changed the GPs attitude towards me. When she realised that I have been attempting to help myself, in fact I've gone to significant lengths to do so, she then decided to try to help me.
Unfortunately, this meant that she had to use her intranet to find out what the NHS recommended for fibromyalgia. This is when I realised that my third struggle was that I know more about my illness than the experienced, qualified GP.
I reverted to my list; my suggestions were that she refer me to the pain management clinic and / or back to my diagnosing consultant. She reluctantly agreed to refer me to pain management.
Given the title of this blog, I'm sure you can see where this battle is going. I finally received a letter from the pain management clinic to say that in Wales, their strategy was not to see fibromyalgia patients because they feel we wouldn't benefit from the type of help they can provide.
So I'm back to the beginning again.
Yes, I went back to the GP, and the only thing she could give me was a typed list of self-help suggestions that she wanted me to try. Things like nutrition, exercise, mindfulness; all things that I've tried with a little success but not sufficient enough to improve my quality of life.
As the saying goes; I may have lost this battle, but I haven't lost the war.
So I'm regrouping my resources, ready for my next fight, whenever that might be.
I would be interested to hear from others in Wales, perhaps your GPs have secured you more help. I need to know what I should ask for. All suggestions welcome!
Keep smiling.
My surgery is one where it's unusual and unlikely to see the same GP twice. However, I have started insisting on seeing one particular GP. Not because I'm getting the help and support that I need, but because I feel it's the only way for them to get to know me and to learn that I'm not malingering.
So that's my first fight every time I ring the surgery.
Having seen this GP a couple of times, I must admit I got quite emotional on a recent visit. I tried to explain that I didn't feel I was receiving the treatment or support that I needed. Her response, perhaps naturally, was to become defensive. Which in turn made me more emotional.
So that's my second battle; trying to explain exactly how I feel without getting upset or angry, which in itself is difficult because cognitively, I'm unable to communicate as eloquently as I used to, thanks to the dreaded fibro fog.
However, on this particular occasion I had prepared a list of all the things I had tried since my diagnosis around 7 years earlier. This changed the GPs attitude towards me. When she realised that I have been attempting to help myself, in fact I've gone to significant lengths to do so, she then decided to try to help me.
Unfortunately, this meant that she had to use her intranet to find out what the NHS recommended for fibromyalgia. This is when I realised that my third struggle was that I know more about my illness than the experienced, qualified GP.
I reverted to my list; my suggestions were that she refer me to the pain management clinic and / or back to my diagnosing consultant. She reluctantly agreed to refer me to pain management.
Given the title of this blog, I'm sure you can see where this battle is going. I finally received a letter from the pain management clinic to say that in Wales, their strategy was not to see fibromyalgia patients because they feel we wouldn't benefit from the type of help they can provide.
So I'm back to the beginning again.
Yes, I went back to the GP, and the only thing she could give me was a typed list of self-help suggestions that she wanted me to try. Things like nutrition, exercise, mindfulness; all things that I've tried with a little success but not sufficient enough to improve my quality of life.
As the saying goes; I may have lost this battle, but I haven't lost the war.
So I'm regrouping my resources, ready for my next fight, whenever that might be.
I would be interested to hear from others in Wales, perhaps your GPs have secured you more help. I need to know what I should ask for. All suggestions welcome!
Keep smiling.
Tuesday 21 February 2017
Long time, no blog - and here's why.
I know it's been a while, sorry!
A lot has changed. I no longer work for a start. The company I worked for ended my contract, let me go. Despite missing the money (a lot), it's been the best thing that could have happened. I could not have sustained the level of commitment I had always given to my career for very much longer anyway.
Our youngest son flew the nest, meaning that it's just hubby and me. So we got two fur babies to keep me company. They can be a pain in the bum but I couldn't be without them. Peggy and Polly are both Pug X Russell's.
My daughter got married last November. It was the most beautiful day. We have some fantastic and special memories which will last a lifetime.
My oldest son had a beautiful baby boy. Although our son broke up with his girlfriend, our grandson is truly loved and adored by both families, and we are all trying to work through the difficult times by focusing on what's best for Blake.
My hubby and I joined Slimming World and have lost over 6 stone between us. We were desperate to lose weight for the wedding. However, hubby still has a little more to lose and is continuing the struggle. Having the wedding to aim for helped us focus and since the wedding we've strayed a little, but we're still going. We've got a weekend away in June, so that's our next target.
Well I think that's all the news, so we're up to date.
Fibro-wise; I can't decide whether I've deteriorated because I no longer work, or I've improved because I no longer work (and have lost 2 stone)??
How can I be so confused?
When I worked I travelled by train to London 3 days a week, used the tube or walked from office to office, gave presentations to audiences upto 100 people, stayed in hotels most weeks, or drove around 400 miles per week. I have no doubt that I could not do this any more. I'm not sure if I might still have been doing this if my contract hadn't ended, although I was struggling more and more towards the end. I often used my walking stick when working, and was in my wheel chair all weekend. But I seemed to be able to push through when I needed to. This wasn't a conscious decision, it just happened. However, as soon as I relaxed (weekends and holidays) I would hit a massive flare.
However, because I no longer work I'm more able to pace myself, which means that I have to use my wheel chair less often. Although when I feel unwell I'm now able to go to bed - I have the choice. So rather than go out in my chair I choose not to go out - I'm pacing! I have an afternoon nap most days and even a little cold will have me bedridden for a few days.
I do know for sure that my cognitive ability has definitely declined. My brain fog is becoming more difficult especially when I'm tired. I can't find my words, my memory is terrible (both short and long term) and my co-ordination is rubbish. I feel that I have dumbed down! It becomes vey frustrating when I can't communicate in the way that I want to.
To add to my list of diagnoses, I also suffer from asthma, costochondritis and diverticulitis. I'm also currently undergoing tests for kidney problems. What joy!
Well I think I've rambled for long enough. I will try to post more regularly now, especially as I have more time!
A lot has changed. I no longer work for a start. The company I worked for ended my contract, let me go. Despite missing the money (a lot), it's been the best thing that could have happened. I could not have sustained the level of commitment I had always given to my career for very much longer anyway.
Our youngest son flew the nest, meaning that it's just hubby and me. So we got two fur babies to keep me company. They can be a pain in the bum but I couldn't be without them. Peggy and Polly are both Pug X Russell's.
My daughter got married last November. It was the most beautiful day. We have some fantastic and special memories which will last a lifetime.
My oldest son had a beautiful baby boy. Although our son broke up with his girlfriend, our grandson is truly loved and adored by both families, and we are all trying to work through the difficult times by focusing on what's best for Blake.
My hubby and I joined Slimming World and have lost over 6 stone between us. We were desperate to lose weight for the wedding. However, hubby still has a little more to lose and is continuing the struggle. Having the wedding to aim for helped us focus and since the wedding we've strayed a little, but we're still going. We've got a weekend away in June, so that's our next target.
Well I think that's all the news, so we're up to date.
Fibro-wise; I can't decide whether I've deteriorated because I no longer work, or I've improved because I no longer work (and have lost 2 stone)??
How can I be so confused?
When I worked I travelled by train to London 3 days a week, used the tube or walked from office to office, gave presentations to audiences upto 100 people, stayed in hotels most weeks, or drove around 400 miles per week. I have no doubt that I could not do this any more. I'm not sure if I might still have been doing this if my contract hadn't ended, although I was struggling more and more towards the end. I often used my walking stick when working, and was in my wheel chair all weekend. But I seemed to be able to push through when I needed to. This wasn't a conscious decision, it just happened. However, as soon as I relaxed (weekends and holidays) I would hit a massive flare.
However, because I no longer work I'm more able to pace myself, which means that I have to use my wheel chair less often. Although when I feel unwell I'm now able to go to bed - I have the choice. So rather than go out in my chair I choose not to go out - I'm pacing! I have an afternoon nap most days and even a little cold will have me bedridden for a few days.
I do know for sure that my cognitive ability has definitely declined. My brain fog is becoming more difficult especially when I'm tired. I can't find my words, my memory is terrible (both short and long term) and my co-ordination is rubbish. I feel that I have dumbed down! It becomes vey frustrating when I can't communicate in the way that I want to.
To add to my list of diagnoses, I also suffer from asthma, costochondritis and diverticulitis. I'm also currently undergoing tests for kidney problems. What joy!
Well I think I've rambled for long enough. I will try to post more regularly now, especially as I have more time!
Sunday 11 May 2014
May 12th Blog Bomb!
It's so important to continue to raise awareness of the invisible illnesses, because it often feels (to me) that there's very little support or research being undertaken to gain a better understanding of the causes, and subsequently cures for these miserable illnesses.
I hope that's just my perception?
What I'd like to do with this Blog Bomb, is catalogue some of the resources that are available to help sufferers of Fibromyalgia. Whether that's financial, medical, or perhaps more importantly, understanding and empathy.
Helpline
FMA UK National Helpline 0844 887 2444 Mon - Fri 10am to 4pm - helpline
Websites
FMA UK http://www.fmauk.org/ - Fibromyalgia website
FMAUK FibroMapp - An app to help track symptoms / medications etc
FM NHS Choices http://www.nhs.uk/conditions/fibromyalgia/pages/introduction.aspx
UK Fibromyalgia website http://www.ukfibromyalgia.com/
Facebook.com
Fibro Chat
Fibromyalgia UK
Fibromites With Hope
Friends Because We Have Fibro
Support for Fibro Sufferers
Uk Fibromyalgia
Women With Fibro
Twitter
FibroModem
Fibroaction
Fmauk
May12th
theslowlane_ME
I'm sure there are many other really useful resources that can be added to this list, I'm sorry if I've missed anyone off.
Keep up the good work friends.
Keep smiling and be strong.
I hope that's just my perception?
What I'd like to do with this Blog Bomb, is catalogue some of the resources that are available to help sufferers of Fibromyalgia. Whether that's financial, medical, or perhaps more importantly, understanding and empathy.
Helpline
FMA UK National Helpline 0844 887 2444 Mon - Fri 10am to 4pm - helpline
Websites
FMA UK http://www.fmauk.org/ - Fibromyalgia website
FMAUK FibroMapp - An app to help track symptoms / medications etc
FM NHS Choices http://www.nhs.uk/conditions/fibromyalgia/pages/introduction.aspx
UK Fibromyalgia website http://www.ukfibromyalgia.com/
Facebook.com
Fibro Chat
Fibromyalgia UK
Fibromites With Hope
Friends Because We Have Fibro
Support for Fibro Sufferers
Uk Fibromyalgia
Women With Fibro
FibroModem
Fibroaction
Fmauk
May12th
theslowlane_ME
I'm sure there are many other really useful resources that can be added to this list, I'm sorry if I've missed anyone off.
Keep up the good work friends.
Keep smiling and be strong.
Friday 9 May 2014
#ThisisME - A Blog Chain
#ThisisME is
a blog chain event run by Louise Bibby of Get Up and Go Guru.
A link to her post about the initiative can be found on her site here:
This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain
She has requested that each participant answer a series of questions about their illness - either on their own blog, or by emailing the answers to Louise herself, for inclusion on her blog. My contribution follows:
A link to her post about the initiative can be found on her site here:
This is M.E. – ME /CFS / Fibro Awareness Day 2014 – Blog Chain
She has requested that each participant answer a series of questions about their illness - either on their own blog, or by emailing the answers to Louise herself, for inclusion on her blog. My contribution follows:
#ThisisME
What is your name & how long have you had ME / CFS / FM?
·
Dawn Derraven, I’ve had Fibro for a long time but
was only diagnosed just over a year ago.
Where do you live?
·
Wales, in the shadow of Twmbarlwm
Age?
·
47
5 things about you that the people in your life probably don’t know?
(non-illness related):
·
I may seem strong but I’m easily hurt.
·
I can’t stand bad feelings between anyone.
·
I have a very large, fluffy, purple onesie!
·
I really love my job.
·
I wish I’d never had my tattoo.
5 things about you that the people in your life
probably don’t know?
(illness related):
(illness related):
·
When I’m really tired I can’t talk, think, text or
even smile; breathing takes all my effort.
·
I’m not boring or up-tight, it’s just that laughing,
singing and dancing, use up too many spoons that I can’t afford to use.
·
I can’t function when I’m in pain as everything
hurts, even my teeth.
·
If I forget to do something or forget where I put
something, it’s not my fault, it’s my FM.
·
I get anxious if the route out of a room is blocked
by someone or something. Even if someone has their legs outstretched.
What one thing do you think most people wouldn’t know about living with ME / CFS / FM that you’d like them to know?
·
I’m never well; I just have various levels of
unwell. Some I can cope with, some I can’t.
What is the most frustrating aspect for you of
living with ME / CFS?
·
Having to cancel plans at the last minute as I feel
unwell, being unreliable.
Anything else you’d like to say before finishing?
·
Please take the time to learn about these invisible
illnesses, the more you understand the easier it will be for all of us.
****
Louise says:
·
Any other bloggers who want to join the blog chain,
please copy this and fill in your own answers.
·
Then email Louise@GetUpAndGoGuru.com so she can
link to your blog post in her original post.
I’d
Love You To Join In!!
Saturday 3 May 2014
A Valuable Lesson
I remember the first counselling session I had, she asked how I felt and why I booked the appointment. I found it really weird talking about myself, I described it as self- indulgent. I'd never spoken about myself so much, it felt uncomfortable.
That's the sort of person I used to be. Always putting everyone else first, a people pleaser, going out of my way to fix everything for everyone. I'm annoyed that FM has taken that away from me.
I have had to learn to say no, I have had to accept that I'm not invincible, I'm not Super Woman!
Instinct kicks in and I want to revert to my old self; I used to be the person who everyone came to for help, both at work and at home.
I still am that person actually, but my response has had to change. Rather than taking control and fixing things, I have to give my family, friends and colleagues advice about how they can sort things out for themselves.
I've had to relinquish control and that took a long time to adjust to.
I simply don't have the energy to search for answers, to shop for particular items, to mend clothes, to research others problems, to physically do things for everyone else.
I have had to learn to be a little selfish! I'm not the first to offer my services any more. I will sit and watch my husband cleaning if I don't feel up to helping out. I try to encourage my kids to be self-sufficient, I advise them but I don't take over (I hope). I know my limitations, I know that I cant do everything. I choose my battles, I don't fight everything that I don't like, I let some things go over my head. I don't have the energy for perfection any more.
My consultant told me that FM generally strikes a certain kind of person, the person who's too nice. The person who's too helpful, too reliable, the 'go to' person. He also told me that some employers set out to identify potential employees with these personality traits, and that as a consequence company sickness levels are much higher in those organisations.
I hope this doesn't read as being pompous or as blowing my own trumpet, that's not my intention. I just wanted to share this really valuable lesson that I've had to come to terms with.
So now I have another adjustment to make, I have to learn not to feel so guilty about putting myself first, but that's a whole 'nother story!
Keep smiling and be strong.
That's the sort of person I used to be. Always putting everyone else first, a people pleaser, going out of my way to fix everything for everyone. I'm annoyed that FM has taken that away from me.
I have had to learn to say no, I have had to accept that I'm not invincible, I'm not Super Woman!
Instinct kicks in and I want to revert to my old self; I used to be the person who everyone came to for help, both at work and at home.
I still am that person actually, but my response has had to change. Rather than taking control and fixing things, I have to give my family, friends and colleagues advice about how they can sort things out for themselves.
I've had to relinquish control and that took a long time to adjust to.
I simply don't have the energy to search for answers, to shop for particular items, to mend clothes, to research others problems, to physically do things for everyone else.
I have had to learn to be a little selfish! I'm not the first to offer my services any more. I will sit and watch my husband cleaning if I don't feel up to helping out. I try to encourage my kids to be self-sufficient, I advise them but I don't take over (I hope). I know my limitations, I know that I cant do everything. I choose my battles, I don't fight everything that I don't like, I let some things go over my head. I don't have the energy for perfection any more.
My consultant told me that FM generally strikes a certain kind of person, the person who's too nice. The person who's too helpful, too reliable, the 'go to' person. He also told me that some employers set out to identify potential employees with these personality traits, and that as a consequence company sickness levels are much higher in those organisations.
I hope this doesn't read as being pompous or as blowing my own trumpet, that's not my intention. I just wanted to share this really valuable lesson that I've had to come to terms with.
So now I have another adjustment to make, I have to learn not to feel so guilty about putting myself first, but that's a whole 'nother story!
Keep smiling and be strong.
Subscribe to:
Posts (Atom)