Hello!
Foggy would like to tell you all about the link between Hypermobility Syndrome and M.E. Sally has both....Foggy just thought Sally was bendy!
Foggy thinks that Sally is on a huge learning curve with this campaign; she is learning things about her own body as the campaign progresses! Foggy has used all of his doggy memory to put together a timeline of Sally's illnesses since childhood; maybe you will be as baffled as we are about how a lot of NHS doctors haven't linked it all together!
Baby years - Tested for Coeliac disease, belly button hernia
14-16 -undiagnosed illness. Lots of tests....2 years of sporadic school non attendance due to extreme fatigue, feeling fluey, nausea
18 - diagnosed with Hypermobility Syndrome - joints had become very painful
24 - Generally unwell, skin rashes, swollen tongue, started anti-candida diet
27 - Severe reactions to stress started - swollen tongue, heart palpitations, panic attacks -issued with an Epi-pen when reaction very severe.
30 - Labyrinthitis ear infection - lasted 6 weeks.......and then 2 weeks later..
30 - Start of all sensory migraines and M.E (Although it took over 2 years for her to be diagnosed)
31 - Allergies and intolerances started.
36 - Depression
All of the above can be found under the umbrella of M.E.
Patch has told Foggy that Sally has always been a bit sickly and 'a delicate little flower'. None of us realised that everything could be linked together. So, Sally isn't just raising awareness for others; this campaign is helping her get her head around why she has always been 'not quite right'.
Foggy has attached a link for Hypermobility Syndrome. It lists symptoms and causes etc. What it doesn't mention is the crazy spine-tingling sensation that is extremely disconcerting and causes Sally to wriggle about when she has been sitting for too long!
http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Symptoms.aspx
Sally had physiotherapy when she was 18 to help with the Hypermobility Syndrome. It didn't really help but it did temporarily help with posture etc. At the grand old age of 37 she now sees a Chiropractor who helps to 'reset' her joints. Her neck is particularly mobile and that causes a lot of discomfort.
Foggy snogs xxxx
Saturday, 23 August 2014
Monday, 18 August 2014
Hormones
Hello!!!
Foggy is a male soft toy dog but he wants to understand EVERYTHING there is to know about M.E. and what symptoms people have. So, today he is going to talk about how hormones affect his lady followers with regards to M.E.
He knows that in the week prior to THAT time of the month Sally is like a walking zombie. She say's the blood in her veins feels like lead...making every part of her body feel really heavy and uncomfortable. Just moving around at home is more difficult than usual and everything seems to take 3 times as much energy and effort. Her blood pressure feels like it has dropped to the floor and has constant headaches, a painful weight at the back of her head, slightly blurred vision and heart tremors.
The usual M.E. symptoms such as lack of concentration, memory loss, speech difficulties, muscle fatigue, tiredness double during this time. It's got to the stage when in THAT week she can say 'oh that's why!' when she has been wondering why her symptoms were worse the week before.
Foggy has a theory. When the body has to cope with something 'extra' like periods, exertion, and stress ,for example, it shuts down in order to cope. The range of functions required to allow a woman to go through THAT week is huge. Every system in the body is affected on a monthly basis.
Feedback from Foggy's ladies is welcomed; it would be interesting to see if this issue is a common one or if Sally is a freak of nature!
Doggy snogs xxx
Foggy is a male soft toy dog but he wants to understand EVERYTHING there is to know about M.E. and what symptoms people have. So, today he is going to talk about how hormones affect his lady followers with regards to M.E.
He knows that in the week prior to THAT time of the month Sally is like a walking zombie. She say's the blood in her veins feels like lead...making every part of her body feel really heavy and uncomfortable. Just moving around at home is more difficult than usual and everything seems to take 3 times as much energy and effort. Her blood pressure feels like it has dropped to the floor and has constant headaches, a painful weight at the back of her head, slightly blurred vision and heart tremors.
The usual M.E. symptoms such as lack of concentration, memory loss, speech difficulties, muscle fatigue, tiredness double during this time. It's got to the stage when in THAT week she can say 'oh that's why!' when she has been wondering why her symptoms were worse the week before.
Foggy has a theory. When the body has to cope with something 'extra' like periods, exertion, and stress ,for example, it shuts down in order to cope. The range of functions required to allow a woman to go through THAT week is huge. Every system in the body is affected on a monthly basis.
Feedback from Foggy's ladies is welcomed; it would be interesting to see if this issue is a common one or if Sally is a freak of nature!
Doggy snogs xxx
Wednesday, 13 August 2014
Pacing Therapy
Hello!
Today Foggy wants to talk about Pacing therapy.
When Sally was first diagnosed (it took them 3 years to work out what was wrong!), she was told to 'pace' herself and to think of her energy levels as a battery. She should always try and keep her energy battery half full. ME sufferers never have a full battery even with a 'good' nights sleep and lots of rest, but the main objective of pacing is to make sure your battery doesn't run out of power. Don't rest completely and allow your body to go to sleep but don't exert yourself too much either - tricky!
There are no medicines to take for M.E.; Foggy can't understand how so many people are affected with this horrible illness and there are no treatments that don't involve some kind of therapy. Can we have a pill now please?
Pacing is incredibly difficult, believe it or not. Common traits of M.E. sufferers are pushing yourself too hard, being a high achiever and perfectionist. Just because you get ill doesn't mean that personality trait turns itself off. Sally has 'mild' M.E. and, even though she knows it is bad for her health, is always pushing herself too hard and wears herself out A LOT! Sally has always been, and will always be, a high achieving perfectionist and sets, sometimes unobtainable, high targets for herself.
When Sally is at work she tries to regularly go somewhere quiet just to 'tune out' for a couple of minutes (even if that quiet place is the work bathroom). Just that brief rest time is enough to re-balance her battery and she can carry on for a couple more hours before the next break. Girly shopping can only be done if, every 30 minutes or so, she can sit and rest. Constant sensory stimulation wipes her out very quickly. Unless you are a sufferer you don't appreciate how your senses are affected by the noise, lighting and hustle and bustle of shops. Fortunately Sally has lovely understanding friends who force her to rest when Sally is forcing herself to keep going. She hates admitting she can't cope when she is having a good time with friends! They can usually tell she is reaching her limit by looking at her eyes; they glaze over and look empty.
Foggy hopes his M.E. suffering followers aren't allowing their battery to go flat today. Rest and take care.
This is an article on the ME Association website about Pacing therapy
http://www.meassociation.org.uk/2012/05/research-pacing-as-a-strategy-to-improve-energy-management-may-2012/
Doggy snogs xxxxx
Today Foggy wants to talk about Pacing therapy.
When Sally was first diagnosed (it took them 3 years to work out what was wrong!), she was told to 'pace' herself and to think of her energy levels as a battery. She should always try and keep her energy battery half full. ME sufferers never have a full battery even with a 'good' nights sleep and lots of rest, but the main objective of pacing is to make sure your battery doesn't run out of power. Don't rest completely and allow your body to go to sleep but don't exert yourself too much either - tricky!
There are no medicines to take for M.E.; Foggy can't understand how so many people are affected with this horrible illness and there are no treatments that don't involve some kind of therapy. Can we have a pill now please?
Pacing is incredibly difficult, believe it or not. Common traits of M.E. sufferers are pushing yourself too hard, being a high achiever and perfectionist. Just because you get ill doesn't mean that personality trait turns itself off. Sally has 'mild' M.E. and, even though she knows it is bad for her health, is always pushing herself too hard and wears herself out A LOT! Sally has always been, and will always be, a high achieving perfectionist and sets, sometimes unobtainable, high targets for herself.
When Sally is at work she tries to regularly go somewhere quiet just to 'tune out' for a couple of minutes (even if that quiet place is the work bathroom). Just that brief rest time is enough to re-balance her battery and she can carry on for a couple more hours before the next break. Girly shopping can only be done if, every 30 minutes or so, she can sit and rest. Constant sensory stimulation wipes her out very quickly. Unless you are a sufferer you don't appreciate how your senses are affected by the noise, lighting and hustle and bustle of shops. Fortunately Sally has lovely understanding friends who force her to rest when Sally is forcing herself to keep going. She hates admitting she can't cope when she is having a good time with friends! They can usually tell she is reaching her limit by looking at her eyes; they glaze over and look empty.
Foggy hopes his M.E. suffering followers aren't allowing their battery to go flat today. Rest and take care.
This is an article on the ME Association website about Pacing therapy
http://www.meassociation.org.uk/2012/05/research-pacing-as-a-strategy-to-improve-energy-management-may-2012/
Doggy snogs xxxxx
Sunday, 10 August 2014
Skydiving and Stonehenge!!!!!!
Hello!
Team Foggy has been very busy this weekend!
Foggy, Sally and Michele G went to Go Skydive in Salisbury so Foggy could fly!
He hummed 'Flying Without Wings' throughout the entire journey.....not that he could really be heard from inside his globetrotting travel bag!
A lovely lady agreed to take Foggy up with her (see photo) and make his dream come true. Foggy had to do a naked skydive as, wind is 120 mph up in the clouds, there was a risk his collar and tag would fly off! Foggy loved his skydive and wanted to have another go but stopped sulking when we said we were heading to Stonehenge.
Here are the photos of his skydiving experience!
Our Stonehenge experience was EPIC!! What should have been a quick 10 minute drive turned into an hour long stop start traffic queue. Things got much better when we got to the Visitor Centre though (more queuing, another 45 minutes) but had fantastic fundraising news so Sally and Foggy were happy!. Foggy enjoyed the replica houses and furnishings and LOVED the extra long walkies through fields to get to the site. He had photos taken from all angles and even tried to play dominoes with the stones (see photo). He made friends and had photos taken with a stuffed monkey (sorry, we forgot to take our own photos!).
This is definitely a day trip M.E sufferers would struggle with. Sally has 'mild' M.E and found the walk to and from the site extremely tiring. The alternative bus ride from the Visitor's Centre wasn't a desirable option when the queue was 45 minutes long! Standing in a queue is also tiring! Sally would suggest M.E sufferers take this into account if deciding whether to visit. It is a VERY tiring experience.
Foggy and co had a fabulous, but exhausting, day travelling around Wiltshire. Additional 400 miles have been added to the mile-o-meter in the past 2 days. Foggy has now travelled 2850 miles. he hasn't even left the UK yet!
Foggy snogs xxx
Team Foggy has been very busy this weekend!
Foggy, Sally and Michele G went to Go Skydive in Salisbury so Foggy could fly!
He hummed 'Flying Without Wings' throughout the entire journey.....not that he could really be heard from inside his globetrotting travel bag!
A lovely lady agreed to take Foggy up with her (see photo) and make his dream come true. Foggy had to do a naked skydive as, wind is 120 mph up in the clouds, there was a risk his collar and tag would fly off! Foggy loved his skydive and wanted to have another go but stopped sulking when we said we were heading to Stonehenge.
Here are the photos of his skydiving experience!
 |
| Foggy LOVES planes and flying!!! |
Our Stonehenge experience was EPIC!! What should have been a quick 10 minute drive turned into an hour long stop start traffic queue. Things got much better when we got to the Visitor Centre though (more queuing, another 45 minutes) but had fantastic fundraising news so Sally and Foggy were happy!. Foggy enjoyed the replica houses and furnishings and LOVED the extra long walkies through fields to get to the site. He had photos taken from all angles and even tried to play dominoes with the stones (see photo). He made friends and had photos taken with a stuffed monkey (sorry, we forgot to take our own photos!).
This is definitely a day trip M.E sufferers would struggle with. Sally has 'mild' M.E and found the walk to and from the site extremely tiring. The alternative bus ride from the Visitor's Centre wasn't a desirable option when the queue was 45 minutes long! Standing in a queue is also tiring! Sally would suggest M.E sufferers take this into account if deciding whether to visit. It is a VERY tiring experience.
 |
| Dominoes!!!! |
Foggy and co had a fabulous, but exhausting, day travelling around Wiltshire. Additional 400 miles have been added to the mile-o-meter in the past 2 days. Foggy has now travelled 2850 miles. he hasn't even left the UK yet!
Foggy snogs xxx
Friday, 8 August 2014
Severe ME Day - 8th August - Tower of London Poppies Trip!!
Hello!
Foggy wanted to do something special on Severe M.E day and he chose a day out in London. As London is very hectic and noisy it is 100% somewhere ME sufferers feel the full extent of their illness. One of Foggy's campaign objectives is to do things that M.E sufferers either find impossible or extremely difficult to do. So this day trip was perfect!
The start of the day was TENSE! Foggy was due to be handed back to Sally after the Jersey trip and then taken by Sally to the train station. Unfortunately, the Jersey Foggy sitter was running a little bit late and stress levels were getting a little bit HIGH! However, Foggy eventually arrived and a mad dash followed to get him to the station on time. 10 minutes to spare!
Foggy LOVES trains and loved every minute of the 1 hr 45 trip to Waterloo. He wasn't too keen on the underground though; too noisy and hot. Arriving at Tower Hill was lovely....lots of green grass....walkies!!
This week also sees the launch of the Tower of London's art installation called 'Blood Red Lands and Seas of Red'. See the link for more info http://poppies.hrp.org.uk/. One of Sally's friends Yvonne O'Connell had volunteered to 'plant' the ceramic poppies as part of an organised group. She took Foggy into the moat to take some photo memories of the day (see below).
While Foggy was being Foggy-sat by Yvonne, Jeanette H (Sally's friend) and Sally took a walk along Tower Bridge spreading the M.E. word further - Sally wore her official ME Association t-shirt to promote Severe M.E day.
The day was exhausting; too hot, stifling, bustling, fast paced, loud and, although it wasn't sunny, it was very bright. Call me Gizmo - remember? Bright light, bright light!! All of these factors are things that affect M.E sufferers. Sally usually avoids London like the plague but....this was for Foggy and the poppies. Had to be done :) But now, she is sat in bed trying to engage a brain cell - they all seem to have shriveled and died tonight!
Remember, Foggy is globetrotting to raise funds and awareness for the ME Association. Please donate at www.justgiving.com/mefoggydog
Hope you like the photo's - Foggy snogs xxxxx
.JPG)
Foggy wanted to do something special on Severe M.E day and he chose a day out in London. As London is very hectic and noisy it is 100% somewhere ME sufferers feel the full extent of their illness. One of Foggy's campaign objectives is to do things that M.E sufferers either find impossible or extremely difficult to do. So this day trip was perfect!
The start of the day was TENSE! Foggy was due to be handed back to Sally after the Jersey trip and then taken by Sally to the train station. Unfortunately, the Jersey Foggy sitter was running a little bit late and stress levels were getting a little bit HIGH! However, Foggy eventually arrived and a mad dash followed to get him to the station on time. 10 minutes to spare!
Foggy LOVES trains and loved every minute of the 1 hr 45 trip to Waterloo. He wasn't too keen on the underground though; too noisy and hot. Arriving at Tower Hill was lovely....lots of green grass....walkies!!
This week also sees the launch of the Tower of London's art installation called 'Blood Red Lands and Seas of Red'. See the link for more info http://poppies.hrp.org.uk/. One of Sally's friends Yvonne O'Connell had volunteered to 'plant' the ceramic poppies as part of an organised group. She took Foggy into the moat to take some photo memories of the day (see below).
While Foggy was being Foggy-sat by Yvonne, Jeanette H (Sally's friend) and Sally took a walk along Tower Bridge spreading the M.E. word further - Sally wore her official ME Association t-shirt to promote Severe M.E day.
The day was exhausting; too hot, stifling, bustling, fast paced, loud and, although it wasn't sunny, it was very bright. Call me Gizmo - remember? Bright light, bright light!! All of these factors are things that affect M.E sufferers. Sally usually avoids London like the plague but....this was for Foggy and the poppies. Had to be done :) But now, she is sat in bed trying to engage a brain cell - they all seem to have shriveled and died tonight!
Remember, Foggy is globetrotting to raise funds and awareness for the ME Association. Please donate at www.justgiving.com/mefoggydog
Hope you like the photo's - Foggy snogs xxxxx
Choo choo!!!!! So excited!
Are we there yet?
Bright light got a bit much....he can't wear sunglasses so he hid instead!
Globetrotting!
Let the humming ABBA songs begin!
Holding on for dear life!! Underground trains wobble!
Don't drop me!!!!
That's it...tilt it ......a little bit more....and a bit more......
Stunning poppy display
Hope he's not going to stick me on a stalk.....
Yvonne's little helper :)
Need these gloves to keep my paws clean! Planting poppies is dirty work!
I can't read......*sob*
Great views
Pretty flowers....should I go wee on them? No? Oh...they aren't real?!
Beefeater!!!! Foggy has made a new friend
Foggy's new friend Yvonne say's hello from the poppy field
Home time! Foggy is pooped!
Monday, 4 August 2014
Ridiculous idea but....let's put a positive spin on M.E.! (Just for a moment)
Hello!
I'm hijacking Foggy's blog again!
Now, I know that it is crazy to say there is anything remotely positive to be said about M.E. BUT, this weekend made me realise that there are some good things to be said for enforced chilling out as much as possible. This is what happened...
I went to Lyndhurst in the New Forest with a family member. He is aware that I have M.E. but doesn't know what that involves. I certainly educated him this weekend!
The theme of the weekend was to chill out and recharge. As all sufferers know though, just being out of the usual routine is enough to flip your body into overdrive. I felt wiped out from the second I arrived to when I came home on Sunday, even though I relaxed as much as possible and didn't exert myself.
Spontaneously, we decided to do a photography workshop on Saturday. It was due to run from 10-3 and I figured that as we were due to learn stuff we would be sat taking notes for at least half of it....wrong! We went out and about in the New Forest countryside taking beautiful correctly focused and composed photos (see some of mine on this blog). Scenery was lovely but the weather was damp/wet/torrential. M.E. sufferers are like human barometers and so I instantly felt light headed, faint, dizzy, very cold and a little bit like a limp lettuce leaf! I managed to last until lunchtime when we all trudged back to the hotel. It was a fascinating and educational morning but by lunch I was wiped out.
Disappointingly, I had to decline the second half of the day and spent the next couple of hours 'resting' in my room. I couldn't engage a brain cell so having company would have been a pointless exercise. Externally my body temperature was fine but I was shivering, I had icy feet so needed to wear thermal socks (it's summer!) and my head felt empty.
Anyway, that was the bad stuff...this is where the good stuff starts :)
My cousin looked after me as much as possible, which was lovely. I suggested having a pj's and rubbish telly night in on Saturday. He is a sociable go-getter and probably hated the idea but said he'd love to (I was thinking what a waste of a trip away but needs must!). So, he went to the shop and bought as much yummy family sized bags of chocolate for us to gorge ourselves on while we chilled out. He blew my mind by saying he is always so busy he has NEVER (yes...NEVER) had a pj's, chocolate and rubbish telly night in. O.M.G. PJ's and rubbish telly describe most of my evenings and weekends when I am flaked out!
We were both uber relaxed, no conversation (I still didn't have a brain cell) just quiet company. He fell asleep at 9pm and had the best night sleep he has had for a very long time. At the start of the weekend we were both mega stressed and in need of a recharge. Just taking enforced time out helped both of us.
Maybe M.E. is being kind to our bodies by telling us that we just need to stop....... and go again but at a slower pace. Maybe everybody needs to adopt an M.E. sufferer lifestyle.......just chill! :)
M.E. needs to be re-branded.....it's cool to chill ha!
Anyway, enough of the crazy positivity.
Love to all,
Sally xxx
I'm hijacking Foggy's blog again!
Now, I know that it is crazy to say there is anything remotely positive to be said about M.E. BUT, this weekend made me realise that there are some good things to be said for enforced chilling out as much as possible. This is what happened...
I went to Lyndhurst in the New Forest with a family member. He is aware that I have M.E. but doesn't know what that involves. I certainly educated him this weekend!
The theme of the weekend was to chill out and recharge. As all sufferers know though, just being out of the usual routine is enough to flip your body into overdrive. I felt wiped out from the second I arrived to when I came home on Sunday, even though I relaxed as much as possible and didn't exert myself.
Spontaneously, we decided to do a photography workshop on Saturday. It was due to run from 10-3 and I figured that as we were due to learn stuff we would be sat taking notes for at least half of it....wrong! We went out and about in the New Forest countryside taking beautiful correctly focused and composed photos (see some of mine on this blog). Scenery was lovely but the weather was damp/wet/torrential. M.E. sufferers are like human barometers and so I instantly felt light headed, faint, dizzy, very cold and a little bit like a limp lettuce leaf! I managed to last until lunchtime when we all trudged back to the hotel. It was a fascinating and educational morning but by lunch I was wiped out.
Disappointingly, I had to decline the second half of the day and spent the next couple of hours 'resting' in my room. I couldn't engage a brain cell so having company would have been a pointless exercise. Externally my body temperature was fine but I was shivering, I had icy feet so needed to wear thermal socks (it's summer!) and my head felt empty.
Anyway, that was the bad stuff...this is where the good stuff starts :)
My cousin looked after me as much as possible, which was lovely. I suggested having a pj's and rubbish telly night in on Saturday. He is a sociable go-getter and probably hated the idea but said he'd love to (I was thinking what a waste of a trip away but needs must!). So, he went to the shop and bought as much yummy family sized bags of chocolate for us to gorge ourselves on while we chilled out. He blew my mind by saying he is always so busy he has NEVER (yes...NEVER) had a pj's, chocolate and rubbish telly night in. O.M.G. PJ's and rubbish telly describe most of my evenings and weekends when I am flaked out!
We were both uber relaxed, no conversation (I still didn't have a brain cell) just quiet company. He fell asleep at 9pm and had the best night sleep he has had for a very long time. At the start of the weekend we were both mega stressed and in need of a recharge. Just taking enforced time out helped both of us.
Maybe M.E. is being kind to our bodies by telling us that we just need to stop....... and go again but at a slower pace. Maybe everybody needs to adopt an M.E. sufferer lifestyle.......just chill! :)
M.E. needs to be re-branded.....it's cool to chill ha!
Anyway, enough of the crazy positivity.
Love to all,
Sally xxx
Subscribe to:
Posts (Atom)