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Monday, 30 March 2015

Italia!!

Hello,

Foggy is enjoying being back at Foggy HQ with Sally, just resting his paws before seeing the delights of Italia! Sally has been worrying a little bit; this is why....

Hi!

Not long to go now!! I will be heading to Marco Polo airport in Venice with my friend Alessia and Foggy in 2 days time. I have been to Venice and Verona before but it will be lovely to see these two beautifully stunning cities again.
Centurion sandwich!! Verona Ampitheatre
Team Foggy will also be heading to Mantua, somewhere new to explore. I am worried because I am already feeling wiped out thanks having to Laryngitis for the past 2 weeks, I am still recovering from that. Which, as any sufferer knows, will probably take a few more weeks before I feel 'normal' again. This means that I will probably be feeling like death warmed up already after the hour and a half car journey to Gatwick on Thursday! Change of routine always upsets my M.E. symptoms however lovely that change of routine is.

Once I get to the airport my M.E. senses have to cope with bright lights, noise, busy-ness (is that a word?) and lots of standing up. I am having to plan, as much as possible, how I am going to reserve energy while all this is going on. Obviously sitting and resting is going to be key while we wait for our flight. No airport shopping for me *sob*;I may even put in earplugs to dumb down the surrounding noise. *Sorry Alessia, I don't think I'm going to be good company in the airport!!* I'm ok with flying. I'll just close my eyes and deep breathe to lower my heart rate ready for more travelling when we arrive in Venice. Essentially, this is PACING therapy....quiet time without sensory overload.

Team Foggy is staying with Alessia's parents. This wasn't organised to help with my symptoms but with hindsight I think it will help greatly. I wont feel pushed to keep going constantly and can take myself off to my room or a quiet space to recharge while Alessia catches up with family. Being in a homely environment is also less stressful than a sterile hotel room.
It also means that Alessia's dad is picking us up from the airport - THANK YOU ALESSIA'S DAD!! (less stress) and Alessia has offered to drive us around Italy during our stay (again, less stress). So I think this element of the trip is manageable and wont overly attack my energy levels. I can sleep/close my eyes in the car and just let Alessia concentrate on the driving. Much better than noisy trains, bright lights and busy-ness (OK, the non word for the second time!)

Obviously I can't micro-manage the rest of the trip as I have no idea what is coming up! But, I KNOW I will be tired. That is a given. So, it is an excuse to sit, people watch and take in the wonderful culture. Italy is so beautiful, it is definitely one of my favourite destinations and plan to come back many times over my lifetime - health permitting.

The reason I am worrying? I do not want my health to YET AGAIN have a damaging impact on the
Alessia - valued member of Team Foggy!!
holiday of others. Alessia is lovely and would never, ever say that my health annoys her because we can't be as active as she would like to be (she is ALWAYS on the go!!). From past experience I know that come day 2 or 3 of our trip I will be exhausted. A few days of activity will catch up on me
regardless of how much rest I have had; Alessia has told me that if I feel the need to stay and rest in her parents house on that day then so be it. It's me that doesn't like that idea!!! Why be in Italy if you are so blooming blah that you can't get out and about and see the sights? It is my own issues and thoughts that get me upset. I don't want to let anyone down by being ill. It is frustrating, upsetting and makes me a little bit down if I am honest.

In addition to the energy side of symptoms, I also have to consider my dietary issues. I will be in the land of wonderful, fabulous pizza, pasta and wine. How much of this will I be able to enjoy?.....ZERO. There is no choice in the matter. If I do indulge in anything glutinous the only sights I will be seeing are the inside of many toilet cubicles as we travel around northern Italy!
*sob*
 Not worth it. When I visited Lake Garda a couple of years ago gluten free food wasn't readily available and the only dessert they could offer me in the hotel was a plate of strawberries. So, I don't have high hopes!!!  Such a shame but there is nothing I can do about it. I'm not quite sure why I have a reaction to wine but it's the same as gluten so again, I have to steer clear. Vodka is definitely the way forward! Alessia's mum has already looked into getting gluten free food from her local supermarket (THANK YOU xx) which is a relief; it will mainly be a problem when we are out and about and staying in a hotel for one night.

I hope you all enjoy the many photos and videos I will be taking; I hope they are worth my 'unwell-ness' (yes I know!!! Again not a word).

Ciao

Sally xx

Friday, 27 March 2015

Exercise

Hello!!

Foggy has just got back to Foggy HQ; he had such a lovely time with Jools and co in Osaka, Japan that he is a little sad to to be home. If you would like to see the photos of his trip please take a look at:
https://www.facebook.com/media/set/?set=a.1567105276883726.1073741868.100007528067190&type=1&l=88332b8314
(You can take a look even if you haven't got a Facebook account)

Foggy has asked me to write a blog about why I am a lazy slug and don't exercise, or at most venture out for a 30 minute dog walk a couple of times a week. So here goes....

This is a blog topic that I have been wary of writing. I do not want it to come across as moaning or overly negative. I appreciate that in every area of public life there are people who don't exercise for one reason or another. Choice, health or circumstances. This blog is purely about why I, as an M.E. sufferer, cannot exercise as much as my body/brain is craving to do.

When you get diagnosed with M.E. your personality and ambition doesn't vanish into thin air; this can lead to deep frustration. It has been a life ambition of mine to run the London Marathon but I know it is a dream that will never be realised. This isn't me being defeatist; the training alone would wipe me out and I do not want to take the risk that it will worsen my symptoms. That is my own personal choice. When I first started the Foggy campaign so many non sufferers asked why I didn't just do a physical challenge 'like everyone else'..... Clearly these people had no clue about the limitations enforced by M.E.

Since being diagnosed in 2007 I have had periods of time when my energy levels have balanced out and the M.E. hasn't had a massive impact on my life (cognitive issues persisted throughout). Call these periods remission if it is easier to understand. In these rare periods I became active again. I used to go to the gym 4 times a week; there is nothing better than the endorphin rush that you get post workout. I had to give up regular exercise because of surgery on my leg and by the time I was healed the M.E. had come back with a vengeance. Dragging myself into work each day was enough of an
If I swam now I would fall asleep on this float!
energy leech! The next period of remission happened a couple of years later and I chose to take up low impact swimming sessions as my leg muscles were still healing post surgery. My energy levels are always best first thing in the morning. 3 mornings a week, starting at 7am, I was in my local pool doing lane swimming for half an hour before hot footing it into work. Again, the endorphin rush felt amazing and I became hooked. Then, another setback, more surgery so the exercising stopped. That was 18 months ago and my energy levels are still not good enough to even contemplate physical exercise. My job is physical and so I do a fair amount of moving around and being active without planning to, but this of course means I have no energy left by the time I finish work.

I'll admit, I am jealous of anyone who exercises and keeps themselves fit and active. I admire those people who are able to do tough ultimate challenges and keep running/swimming/cycling for hours, if not days, at a time. I have a constant desire to sign up to a gym again and get back into shape
In my mind this is what I used to look like when I ran!
(my thighs would certainly thank me for it!) but I know, at the present time that would be stupid, I can't even take Patch for a 30 minute walk without having to rest when I get home. I force myself to go for these walks because I believe in getting regular fresh air and keeping as active as you are able to be. In the past 5 years I have had many months stuck indoors recovering from various operations and during those times I was desperate for the freedom to be active again.

When I have a particularly bad day and am laying on my bed not able to feel my arms and legs, I think back to those days of activity and get upset. I miss the endorphin rush. There was a sense of satisfaction knowing that I was taking care of my body and trying to keep myself as healthy as possible. It was almost like I was telling M.E. it couldn't rule my life. I see TV programmes about people with disabilities beating the odds, overcoming immense pain and doing physical challenges. Unfortunately, M.E. doesn't work like that. You can't just use mind over matter and push yourself to the limit. Some sufferers find their limit is putting one foot in front of the other. M.E. affects every system in the body starting with the brain....if your brain says "absolutely no way" to exercise then you are a bit stuck!!

I hate this time of year; everyone I know is trying to shift some weight ready for holidays, re-starting their running schedule now the sun is back out again or trying to lose those extra Christmas pounds and are off to the gym 3-5 times a week (like I used to). One day I'll be back in a gym, wiping the sweat off the handrail and doing 30 minutes on the cross trainer...I have no idea when that day will come but....I CAN'T WAIT!!!

Sally xx



Saturday, 21 March 2015

Where has Foggy been already?

Hello!

Sally keeps telling people where I am going next but I want new Followers to know where I have already been! It's a long list...ready?....

Snowdonia, UK
Royal Albert hall, London, UK
London, Visa office, UK
Vindalanda, UK
Jersey, UK
Stonehenge, UK
Bude, Cornwall, UK

and then I went GLOBAL!!


Kusadasi, Turkey
Sandown, Isle of Wight, UK
Christchurch, New Zealand,
Portland, Santa Cruz, USA
Florida, USA
Walhachin, British Columbia
Bovington, UK
Reykjavik, Iceland
Belfast, Northern Ireland
Copenhagen, Denmark
Petra, Jordan
Sicily, Italy
Malaga, Spain
Emirates Stadium, London, UK
Kerala, India
Melbourne, Australia
Kapaa, Hawaii, USA
New York, USA
Osaka, Japan

Phew!!! I'm loving all of this globetrotting and hope all of my Followers are enjoying my adventures. I am doing this World Tour to raise funds and awareness for the ME Association because my best friend's favourite human Sally has  M.E. One day she wants a very clever person in a white coat to tell her why she has this horrible illness.

My current mileage stands at 133,600 and I am in Osaka, Japan with Jools having a whale of a time!

Foggy snogs xxxxx

Sunday, 1 March 2015

Loneliness....a by-product of M.E

Hello,

So, I am hijacking Foggy's blog again while he is having a whale of a time in Hawaii.

In this blog post I want to address the issue of loneliness felt by M.E. sufferers. Before anyone gets their knickers in a twist, I am well aware that absolutely any human can experience feelings of loneliness, even with friends in a crowded room. However, I want to talk specifically about M.E. and how the illness can cause intense feelings of loneliness and isolation.

The nature of the illness makes loneliness exceptionally common and understandable. Sometimes it is as if you are trapped in your own body and are screaming to get out. Personally, I regularly feel lonely, usually because my body, for whatever reason, isn't allowing me to behave how I would like. Perhaps I can't go and see friends or, have managed to go out but haven't the energy to join in, but also because the people I am with don't understand my condition. Distrust and disbelief makes me go in on myself and withdraw from the situation; this just adds to loneliness.

Another aspect to this is that when sufferers are laying in bed with 'payback' and are unable to move, think, understand or speak easily who do you think is there keeping them company? I am assuming, mild sufferers like myself will be upstairs in bedrooms and have to phone downstairs to speak to someone, as we don't have the energy to pop downstairs where the rest of the household are. I often spend 2-3 hours a night alone in my room not talking to anyone due to the need to be horizontal and quiet. To be a severe sufferer with this level of isolation and loneliness, all day, every day, is incomprehensible to me. I am well aware that I am 'lucky' to only have mild symptoms. I send my love, support and best wishes to the many severe sufferers around the globe.

Luckily, I enjoy my own company. However, the loneliness creeps in when my brain is desperate to be active but my body says 'no way Jose!' and I am forced into isolation. This is why I became so close and attached to Patch. Not only was he empathetic to my symptoms but he was excellent company without having to be a burden to family at home. I have lost count of the times he has given me 'that look' and tried to lick away my tears.

If you are a non sufferer please try and put yourself in my, and other sufferers, shoes. We can't 'snap out of it' or change our situation. It is a very desperate place to be and that is why I am running this campaign.

Love

Sal xxx (and Foggy of course)