Financial money stuff.....

Hello!!

This blog is a bit too serious/adult/financial for Foggy so he is handing it over to Sally to tell you all about her dilemma.

Hi,

I decided the other day that I need to get my finances in order and to do the mature thing and sort life assurance. I tried applying 5 years ago but having recent skin cancer meant I was rejected from all quarters. Now, 5 years on, I have the all clear and a life assurance company has contacted me and said I am eligible. Great news!!! Or so I thought. I did the telephone consultation last week; the adviser took all of my medical history. This OBVIOUSLY includes Myalgic Encephalomyelitis (M.E). She did not know anything about M.E. and we had a 5 minute conversation about it. I told her about Foggy, raising awareness and what my symptoms were. She said the illness wouldn't affect my eligibility; felt as if she was glossing over and making light of it. She told me to check the paperwork she was sending in the post and let her know if anything needed amending.

The paperwork turned up last week but I haven't had a brain cell to comprehend the terms and conditions so have only just sat down to read it. There are some inaccuracies that will need to be amended... so, another phone call on Monday coming up.

M.E. is mentioned in the following areas:

Question: Apart from in connection with a condition you've already mentioned have you visited your GP in the last 2 years?
Answer - yes

Question - Please tell us the name of the condition
Answer - M.E.

Question - When did the symptoms first become apparent?
Answer - 2006

Question - Have you suffered two or more separate episodes of this condition?
Answer - Yes (how the heck do I answer this one?!)

Question - When did you last experience symptoms or take treatment for this condition?
Answer - 2014 (again...how do I answer this?! I have it ALL day EVERY day!)

Question - Has your condition resulted in you suffering any periods of anxiety, depression, stress or insomnia requiring treatment in the last 2 years?
Answer - No  (I said no as I have symptoms but no treatment relating to M.E)

Question - When was this condition first diagnosed?
Answer - 2009

Question - Which of the following have you visited regarding this condition in the last 5 years?
Answer - Nurse/CBT, GP

Question - Are you currently on treatment for this condition?
Answer - No

My application has to be sent for a GP referral. My GP isn't an expert on M.E., no one is! He has openly admitted to me that as I have had CBT there is nothing else he can offer me. My concern is, how can the life assurance companies make any decisions if they don't know anything about M.E.? I have no idea what my prognosis is so how can they make a financial decision related to my health/life? I don't know if there is any point pursuing the application as, if I was a life assurance company, I don't think I would cover me!! Feels slightly iffy...as if they are bending the rules to make sure they get another customer. Is it just me?...

Anyway, I'd like to know if any other sufferers have had this situation? What did you do about it?

It's slightly worrying for me as I have no financial provision for later life (mainly due to the skin cancer episode), am single so don't have a second income as back up and I don't know if I would just be better off saving, saving, saving.

Thoughts please.

Sally

xx

Work

Hey!

Foggy thinks Sally has been pushing herself a little bit too hard and wishes she would/could slow down a bit (Not possible Fogs). Foggy would like his non-M.E. sufferer Followers to understand why work demands can make symptoms worse. He is going to use Sally's typical work day as an example to show how working can affect symptoms.

Foggy and Sally on 'Take your soft toy dog to work' day!

Sally works in a large library.....she has said that the building is HUGE!! It takes 85 of her human steps to walk from one end of the floor to the other and there are 3 floors for her to get around each day. Sally has a direct facing customer service role and her shifts are fixed to meet customer demand. This means she is unable to tweak her hours if work demands get to much on a bad M.E. day. Her work day is rigidly timetabled and there aren't many sit down/away from service area jobs to retreat to when the day gets too busy. There are often between 700 - 900 humans in the building at any one time and the building can become hectic and busy. This means that on a daily basis she is probably doing her 10,000 recommended steps during working hours.

Let's talk practicalities for a moment. Working in a library means pushing heavy trolleys laden with around 75 books around corners, through doorways, across floors and in/out of lifts. Ever moved house? Got a bookcase? Remember how heavy those boxes of books were? Sally has to lift and shift these books on a daily basis. Anyone with M.E. will appreciate how carrying heavy objects can make your arms feel....extremely tired. Sally is an intelligent woman and is more than capable of answering any query. However, the physical nature of the role can make her brain 15 seconds slower than she would like. She often finds it hard to string a coherent sentence together; she forgets words. Her brain gets tired at the same rate as her body. There have been many occasions when Sally has been halfway up a flight of stairs to the floor above and her body wants to give up. She has to stop for a slight breather so she doesn't completely grind to a halt.

Sally started working at the Library when she graduated from her masters degree 7 years ago. The role has completely changed from when she started; the Library has evolved during that time into a more customer focused environment. As the Library duties have grown and expanded, Sally's tiredness has increased. During her first Occupational Health visit 7 years ago Sally was told that library work wasn't ideal with her condition, but that all necessary adjustments could be made. This would be great if Sally had her own designated working environment but she doesn't. Hot desking and shared information points mean Sally isn't able to adjust her working environment to suit her needs. Sally has told Foggy she feels she would be able to manage her symptoms much better if she had a job with a desk, flexi time and her own seat! Unfortunately, the fluorescent lighting and air conditioning makes her symptoms worse than they should be and Sally has to wear tinted glasses and layered clothing to cope. When Sally gets cold she gets 'bone-cold' and no amount of clothing warms her up. When the Library heating kicks in the heat is overwhelming and stifling for Sally; this can often make her slightly breathless, heady and makes her body feels like it is wilting. This can be tricky when she is customer facing! Pacing therapy has to come in to play when her symptoms are bad but a direct customer facing role doesn't really allow for unscheduled time away from the desk.. Other M.E. sufferers bodies simply can't cope with the demands of working; She is lucky to be able to 'push through it' and continue working. She plans on working for as long as M.E allows her to; she has bills to pay the same as everyone else.

Foggy wants Sally to start looking after herself and thinks she needs to find a job which doesn't wear her out quite as much. She is very good at her job, a natural communicator but struggles with the physical nature of the role. If any of Foggy Followers think she is doing a fantastic job with this campaign and can help with a future job possibility please get in touch.

Doggy snogs,

Foggy xxxxx

Guest blog from James a 'moderate' ME sufferer

Hi, I'm James (@jpc101 if you're a twitterer) and it's an honour to do a guest post for Foggy!

Well, where do I start?

I've had M.E. for over 20 years (I'm 35). I got the flu over Christmas during my first year at Secondary School. Over the next few months I was on/off at School. I was diagnosed pretty quickly due to having a great GP who was always keeping up with the latest in medical things (pretty amazing back in the early 90s!).

During the first few years of my illness I was pretty much bed bound and so missed most of my Secondary education. I don't have any GCSEs or A Levels, but that hasn't stopped me running my own successful business for nearly 15 years! (I have got a GNVQ Advanced in IT - a two year local college course which took me four years to complete!)

My M.E. has been fairly consistent for the last ten or so years and I'd class it as 'moderate'. It effects every aspect of my life. My main symptom is extreme fatigue. I also suffer from brain fog and when I'm tired I also sometimes get right side muscle spasms/twitches (random and uncontrollable movements of my right arm and leg and neck - which can throw my head around). I've punched walls, kicked things which it's really not a good idea to kick and have thrown a few things around! (I'm left handed but use a mouse with my right hand - a few mice have died...) My fab oust thinks it might be some sort of nervous 'feedback loop' due to my silly M.E. body.

I've also got some food intolerances: yeast, nightshade (potatoes, tomatoes, peppers, aubergines, etc.) and dairy proteins. So this means no chips, pizza or alcohol!!!! I also seem to have extra acidic hands. I strip the paint/varnish off door frames and chair arms with which I'm in regular contact. (I asked my current GP about this and he suggested that I googled 'human paint stripper'!!!)

I live, with my parents, in the (sometimes!) sunny seaside town of Minehead. I work from home as a freelance web designer/developer (http://jpc-design.com). This keeps me pretty busy and I've got clients all over the world. I also run one of the biggest Christmas Information sites on the web (http://www.whychristmas.com) - it had over 6.7 million pageloads in December 2013 and looks like it will be busier this year :) So if you need know anything about Christmas - please check it out!!! I've got some great and understanding clients, as getting my work done can sometimes take longer than I'd like it to.

I don't get out of the house much (in the first few months of 2014 I could count them easily one hand). I've got a mobility scooter to help me zip around the town when I'm well enough to go out - a young guy on one does get some strange looks... Going out often leaves me exhausted for the rest of that day and a couple (or few) after as well.

I play the ukulele (I've got four..!) and the mandolin and am a member of a worship group at my Church (where I'm also the church 'tech guy'!). I love all kinds of music from classical to heavy rock via bluegrass and have about 450 Christmas albums in my iTunes collection as well ;) I'm also a total geek and Apple fan boy. I love anything with buttons to push! I've made some great M.E. friends via the web and especially Twitter. The internet truly is a lifeline for me.

I love watching sci-fi (hurrah for Netflix) and am a fan of 'unusual' sports. My favourites are American Football (go the Oakland Raiders and the Clemson Tigers), Cycling, Ski Jumping and Biathlon (cross country skiing and shooting - sounds strange but it's brilliant to watch!).

So that's me. Thanks for Foggy for letting me tell my story. I'll see you on the web!

Day in the life of a mild M.E. sufferer......at a rugby event

Foggy is upset and not talking to Sally as he is DESPERATE to go to a rugby game and Sally went to one without him yesterday. Foggy thinks people need to know just how tiring fun days out can be for sufferers so has allowed Sally to write another blog post. He (the original) is still in the ether somewhere and Sally has had no luck SO FAR in tracking him down. Foggy's stunt double was still on the way back from Iceland so Sally was Foggy free for her rugby exploits!

Here is Sally's blog post...

Hi!
I went to Twickenham (sacred ground...home of England rugby) yesterday with friends. I woke up tired and my battery was never more than 5/10 full all day. I took the train to meet up with my friends at Waterloo station. The vibrations of the train made me feel unwell - heady and out of sorts. I was looking forward to the day ahead though so tried to ignore it. Anyone who has ever been to Waterloo knows how huge it is, brightly lit, hectic and very busy. Sensory overload!! My friend was running late (train delay) so I was loitering in the station for an hour and a half. There is very limited seating in the station but I managed to find a seat. It was designated for disabled people and those with difficulty standing. Now, we all know that this label applies to me but I still felt guilty sitting there!! I was receiving glares and 'you have no right to sit there' looks. If only they could see how drained/unwell I was feeling. 

I had a lovely birthday treat (belated - thanks Yvonne) for lunch and then it was back on a train to head to Twickenham. It was only supposed to be a quick trip to the stadium, but the train was delayed due to the large crowd attending the game. The train was overcrowded, very hot and stifling. It turned into a 45 minute trip in a sardine can ...in a microwave! By the time we got there I was wilting. The station is a good 10 minute walk (in a crowd) away. Trying to be sociable, chatty and 'up for it' with friends while feeling rough is incredibly difficult and draining. We made it to the stadium (yay!) and sensory overload was doubled. 55,000 people are a little bit noisy and busy! Standing in queues for drinks/toilet/access was uber tiring and I will admit I was flagging by this point. I stayed at a 3/10 energy level point for the game. I sat down for most of it and although my senses were being assaulted I enjoyed the game immensely. For those who care, Barbarians lost narrowly to the Australians 36 -40. 

The trip back to Waterloo was .......... there are no words! 35,000 of the 55,000 all queued to get the train so we decided to take the bus instead. After a 10 minute slow walk in crowds we managed to get on to a packed bus. The bus was hot and crawled slowly towards Richmond where we had decided to attempt to get on the train to Waterloo. I was stood up for most of this, brightly lit, bus journey and my legs felt numb. I was starting to feel empty and I had lost the ability to speak coherently. I think my friends knew because none of us made an attempt to chat. There was an unspoken, mutual need for silence!

The original plan was for me to stay in London for the whole weekend but I was so wiped I made the decision to go back home to Portsmouth. I would be zero company that evening and I knew I would be exhausted this morning and unable to do the things we had planned to do. I wanted my OWN bed and home comforts! The 2 hour trip home was bearable; the carriage was full but not crowded...it was also quiet....bliss. I was finding it tricky to keep my eyes open by this point and sat for most of the journey just resting my eyes. The fluorescent lighting wasn't helping and the shaking vibrations of the carriage were going right through my body.

I arrived home at 9pm......more than a 12 hour day all in

all and I was absolutely exhausted. I was in bed, asleep within 30 minutes of arriving back in Portsmouth. Let me clarify, the day would have been tiring for anyone, even non sufferers would have found it draining. However, the sensory overload for 12+ hours has left me feeling like vapour...I have no oomph left!! Today my brain seems to be ok but I feel like I have been run over by a freight train! Struggling with words a bit though.....my dad has been my own personal dictionary and grammar checker for this blog post!! (So if there are any mistakes it's his fault hee hee). 

Live and learn, I will never stop attending rugby matches...LOVE RUGBY! But, in future I will go by car/coach where there is less need for walking, swapping trains, standing about queueing. I have no idea how I managed it but...I had no choice...once I was in London I could hardly just stop. I had to do whatever I could just to get about and in the right place at the right time.

I wont be going to another game for a while now (unfortunately) but if any of Foggy Followers want to help with Foggy's Bucket List please volunteer to take him to a game *Foggy - PLEEEEEEEEEEEEEEEEEASE!!!*

Sally xx