Can You See The Real Me?

To quote a famous The Who song- ‘Can you see the Real Me’? (5;15-Quadrophenia)

The First photo is the face I present to the world. The face you see is the one when I’m up and about. I dont feel too bad.I have make up on, my daughter has blow dried my hair, I have decent clothes on. I’m out of the house being sociable! ‘Oh you look really well’ is the usual refrain! I just nod and agree.I cant be bothered explaining and lets be honest you dont want to know really. Nobody likes a moaner constantly harping on about their condition.

Imagine only being able to go out once a fortnight and that includes medical appts. Imagine how frustrated, lonely and isolated you’d feel.

But remember this. I am NEVER symptom free. Living with M.E/Fibromyalgia means 24/7 365 days a year, constant pain and exhaustion, unrefreshing sleep, brain fog, and a host of other symptoms. Its just the degree which varies.

The second photo is me most of the time.This is my ‘Normal’. Either resting on the bed or totally bed bound unable to sit up, requiring 24 hr care. This is what you dont see.

I want you to imagine firstly only sleeping for 1 and 1/2 to 2 hours at a time all night every night. Waking, nodding off, most nights not being able to get back to sleep and being awake for 2-3 hrs at a time. Having vivid, bonkers dreams, feeling like you’ve had a light doze not a deep refreshing sleep.

Imagine then trying to wake up around 10ish am and feeling so exhausted that you cant even rouse yourself until 11am.

Imagine waking up in a bed of treacle. The treacle is thick and sticky and weighs you down zapping any strength you had. You have to haul yourself out of that bed of treacle, fighting to get going. But it remains coated to your body so that every movement is heavy, tiring and exhausting.

You force yourself downstairs to make a drink and warm up some food , you dont have the strength and are in too much pain to cook for yourself. Luckily today you can do this. Other days your body is so swamped with exhaustion you cant even lift your head off the pillow. If you’ve misjudged it and theres no one home to help you’re up the creek. No drink, no breakfast.

Aswell as wading through treacle, weighing you down all day, you’re also in pain from head to foot, aching, burning, shooting. Every muscle is protesting. Imagine you’ve just done hours of exercise whilst having the flu, your muscles are screaming, weak and you just hurt.

One way to help ease the pain is to have a long hot soak in the bath. You need help getting in and out, you need help washing. But this gloriously soothing bath might ease your aching body but it exhausts you. That sticky treacle hasnt washed off.Its still there weighing you down, making you wade through it. After your bath you have to just lie on the bed and rest and recoup before getting dressed. If you’re not going out, which is the majority of the time you wear easy, comfortable clothes as you also have Allodynia, this is nerve pain on your skin surface so that even the touch of a cotton top can send hot, searing pain over your whole body. Jeans are too uncomfortable and heavy to wear so its soft jersey leggings and a t-shirt. No buttons, not tight wastebands and soft on your skin.

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my public face

photo me looking rough

my ‘hidden’ face. The real me!

Imagine spending the rest of your day on the bed, you can manage to go on the computer for a short while. You can do some Mindfulness colouring in. You can watch TV for a while or listen to music.  Your tea is made for you and you can get downstairs to eat it. You can just about manage to sit downstairs for half and hour to let the meal digest before you have to go back up and thats it for the night.

But there are days when the exhaustion, the pain, the weight of all that treacle is so weighing you down you can even sit up. You need someone to bring you all drinks and food, help you to the loo, bath and dry you like a baby. The light hurts your eyes so you have to lie with the curtains shut. TV is painful to watch and you’ve no concentration so there’s no TV, no music, no computer. You’re sensitive to sound too and certain pitches cause you physical pain. You’re too exhausted to speak . So you lie in bed feeling that even breathing is too exhausting and an effort, with the curtains shut, ear plugs in and you doze .

You’re not living. You’re existing. You’re isolated ,upstairs, in the bed room, alone. The household is busy around you as the family get on with their lives. You’re very lucky to have a wonderful caring Husband and children who check on you frequently and give help as required (many dont and how they cope alone I’ll never know), but you’re still mostly alone. The phone rarely rings.

Imagine that you can no longer cook for yourself, you can no longer drive, have a regular social life, shop, clean, iron. You rely totally on another human being for absolutely everything we all take for granted. Its soul destroying. This is the Real Me you dont see. This is M.E

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The Emergence, Demise and Reemergence of Hobbies!

PART ONE CHILDHOOD -TEENAGE YEARS

I’ve been musing about all the hobbies I’ve ever had and how they’ve now mostly gone west as I can no longer do many of them with my M.E/Fibromyalgia. But its not all doom and gloom!  Firstly some reminiscing!

As a kid I tap danced. I loved it. I tried ballet but hated the discipline and the extreme postures. I was never a fan of exercise or sports! During my Primary school, tap dancing years I even won the weekly talent comp at Pontins in 1973 against alot of these rehearsed stage school types (that all sounded and looked like Lena Zavaroni and Bonny Langford! My pet hates as a kid). My Mum must’ve been so proud as I won us a free weekend in October to Blackpool Pontins for the regional heats! Luxury! It was awful in the summer so you can imagine it on a cold, wet October weekend!!. We’d gone in the summer for a week  as, every year we went to Blackpool on holiday with my grandma and for years I’d driven my parents mad to go and stay at Pontins! (heaven only knows why?) So grandma had finally acquiesced . Luckily for me I danced appallingly in the regional heats and didnt get through!!

My other loves as a child were art and creative writing. I spent hours painting and drawing. By the age of 8 I had some oil paints. I used to fill art pads with sketches and tell myself stories, I used to make 3D streets out of cardboard and paper and tell stories with them. Between 8-11 I was hooked on Enid Blyton. I know she’s frowned on these days. I loved the Famous 5 and loved story writing time in school . I drew fashions and families with their own stories.

These loves stayed with me through into adult life.

I was brought up with a huge mix of music. My parents loved classical music, opera, but also my Dad  ,aswell as loving Mahler,liked middle of the road stuff like The Carpenters and Herb Alpert and his Tijuana Brass. Mum had a beautiful voice and sang with a choral society so I heard everything from Handels messiah to the annual Gilbert and Sullivan Operetta. I loved singing along to the G&S Operettas. When I went to high school and became a teenager I learnt that classical music wasnt cool and you had to like Pop music!! My new friend introduced me to David Essex. I bought his album and was horrified as I thought it all sounded out of tune!! But then in 1976 I discovered the Bay City Rollers! I loved them. Had all the Tartan rig and paraded about in it much to my mothers shame! My friend and I decided to learn the guitar as we were going to have  band and become famous!!!. See teenage dreams dont change be it the 1970’s or 2019’s! But my parents wouldnt let me just ‘waste my time strumming chords and playing pop songs’. If I was going to learnt the guitar it had to be done properly and so I was dispatched to a Classical guitar teacher who taught me to play ‘properly’. I think my Dad wanted me to be the next Paco Pena!!

I didnt stick at it for long. We mixed at the time with a very musical family.One of the sons is a professional musician with a big Orchestra, so we used to have musical nights where they’d show off their tremendous talent and I’d twang my guitar to the wrong beat and timing!!!

At the age of 14/15 I stumbled into football by accident. I cant remember the exact year- ’77? but Man United Played Liverpool in the FA Cup Final. My friend and I had another friend  we tagged along with in school only, who decided she was supporting Liverpool. I knew nothing about football. I hated sports and my family were not interested in sports at all. My friends father and brother were staunch Man City fans! So for fun and to be contrary my pal and I decided to support Man United in the cup! I can clearly remember watching that final on the TV now. I hadnt a clue what the rules were! I hadnt a clue who the players were! I think I just about grasped that you kicked a ball into a net and scored a goal!! United won, but from that bit of winding our class mate up my pal and I became United supporters!! We then made friends with another girl (the 3 of us are still friends today) and we used to go to the home matches at Old trafford and sit in the Trafford Road end. Seats in 1977/78 were £2.50!! We’d get there for 1.30pm and sit and do our homework until the match started! I later used to go standing in the Stretford End at £1 a ticket with my then boyfriend. I got Dad to redecorate my bedroom red, black and white! I replaced my Bay City Roller posters for Football players and my Jackie and Fab 208 magazines for Shoot football magazine!!! The football obsession didnt last ,which is just aswell as I’d never be able to afford a ticket today!

As a child I’d read voraciously. By the time I was 14-15 and became a real teenager I stopped reading. There wasnt a teen market then for books. They were either kids books or adult books and I lost interest. Luckily by the time I was 18 I was back into reading big time.

In my later teens My music tastes included The Police, The Jam and The Who. In the late 1970’s there was a Mod revival. My Boyfriend was a Mod and I dressed in the black and white with the 60’s pale lipstick. I saw The Who live twice in ’79/’80.

My Music tastes developed and by 1984 I was into U2(Still am!) ,Simple Minds, Joy Division then New Order and some of the New Romantic stuff- Spandau Ballet, OMD.

My Grandma occasionally knitted when I was a kid, then when I got a new boyfriend when I was 17 his Mother was an avid knitter. I was mesmerised by the click clack and fast movement of those needles and how you could create something both lovely and functional from it, so I got my grandma to teach me. There was a really old fashioned hardware /material/ nick nack shop at the top of our street that sold everything from elastic and buttons to net curtains and material, tights, bras and Ladybird clothes. It had the old wooden and glass drawers and showcases. I bought a really old fashioned jumper pattern and some yarns from them and began to knit this jumper! I didnt know about tension in the knitting and so I just cast on and knitted away! When the jumper was complete I was very proud of myself. I looked like Plug from the Beano! The jumper was so large only the top of my head stuck out!! My arms dangled halfway down the sleeves and The hem line was past my knees!! But I was cock-a-hoop with delight at my endeavours and so I started knitting. I was so proud of my creations and then it was cheaper to hand knit than buy a shop made jumper.

So going into adulthood There were my hobbies:

1-Art, painting ,drawing and art history, going to art galleries.

2-Reading and Poetry

3-Music.

4-Knitting

I will discuss their development, introduction of new hobbies and then how its all been affected by my M.E/Fibromyalgia next time.

 

You Need a Hard Exterior Shell. Isolation and Loneliness With M.E/ Fibromyalgia

When you have chronic illness Isolation and consequently loneliness are a massive problem. Its a double edged word especially with M.E and Fibro as you’re too exhausted and in too much pain alot of the time to be sociable. By the same token stress and activity make my symptoms worse so alot of self preservation comes into it too. I want to be there to support friends but havnt the physical or mental strength to do so, so I cut myself off. But because I’m cut off I’m also lonely and isolated.

I was never the life and soul of the party. I only ever had a few close friends. It took me years ,after being bullied at school, to realise that I wasnt boring and unpopular(Well I might be!). , I was shy and introverted. I’ve never been able to chat to all and sundry and feel relaxed in large groups, whilst at the same time I was yearning to be just that very person, the life and soul.

As a married couple my husband and I (I sound like the queen!), had a reasonable selection of couples we hung around with. We had fun and if I say so myself, in the 90’s I made an excellent dinner party! Now the couples have distanced themselves as I cant keep up .We see 1 couple 2 or 3 times a year as its all I can manage.

A while back I observed to hubby that a few of our ‘couples’ friends had really wide social circles and were out most Saturday nights. I felt quite envious. Then I realised that if I did have so many friends I could never keep up with them anyway. Its interesting that as I stopped making dinner parties and we stopped regularly socialising, the invites to other peoples dinner parties dried up. There was none of the – We understand you cant reciprocate but we’ll ask you anyway as you’re good friends’- vibe.It was a case of she cant reciprocate so we wont ask them! It really is a case of out of sight out of mind.

Suffering with permanent pain, exhaustion and brain fog doesnt make it easy to socialise.  I can usually get out once a fortnight and that included medical appts.. I spend most of my time bed bound, or resting on the bed 20 Hrs plus a day. I see very few people. I talk to very few people. I regularly cancel outings. I have to space them out as going out of the house also includes the  medical appts so if I have the Dr and Dentist within a few weeks of each other, there’s my ‘outings’ accounted for.  Because of such limited capacity for socialising I’ve had to rationalise my relationships and have a pecking order. Hubby always comes first. He’s the one person I want to spend what little social life I have with , then come my close friends.

Acquaintances and fair weather friends cant see it. I’ve learnt, through it backfiring, not to go on and on  about my shitty little life as people dont want to hear it and frankly dont care! I had a few ladies who I went out with for lunch. They seemed to intimate that I could talk frankly about my ill health. Its funny that after doing just that  a few times and thinking I was safe and supported, some of them dropped me like hot cakes! Obviously it was a case of -‘oh god she’s off moaning again!’ . I was very distressed at the time but since then I’ve developed a hard shell. I’ve learnt to ignore the pain and loneliness of rejection and feeling left out.

Also as my condition has deteriorated I’ve had to become even more insular to protect myself. I cant physically chat to people on the phone weekly as I used to. I dont have the strength or concentration .I get that I’m really boring these days! I rarely go anywhere. I rarely speak to anyone outside my family So when friends phone and chat and tell me what they’ve been doing I’m lucky if I can say I actually got out for a coffee one day last week! I have no gossip, no conversation as these things are usually spurred on by your daily experiences and by interacting with different people.

I’m lucky that my local Jewish social services hooked me up with a lovely volunteer and we’ve been friends for around 10/11 years now. At first she took me swimming once a week as I enjoyed it and the gym I went to had a hydrotherapy pool which was bliss for my aching muscles. She pushed me in my wheelchair, held my heavy gym bag and gave me whatever assistance I needed. In 2013 I’d deteriorated enough that it wasnt worth paying the gym membership I wasnt even going once a month. So we started going out for lunch most weeks. Again as I’ve got worse our outings have got less and less frequent. We saw each other 5 times last year and this year hasnt got off to a great start! I could ask her to pop in weekly for a chat. That hr and half once a week is ‘my time’. But I’m too exhausted to be able to cope with that.

So yes its a lonely life but one I have no control over…yet!

 

Weekend Away and Another tick off the Bucket list

I decided , when I saw them on TV, that I had to go to Edinburgh Zoo and see the Pandas. so it was listed on my ‘Bucket ‘List. Yes I really do have a list of places I want to visit ranging from Stately homes nearby to world cruises, (well a girl can dream!). Anyway the opportunity arose around the time of our anniversary when I got an E-mail from Premier Inn for £29 rooms. So we booked 2 nights at Edinburgh Livingstone and as it was our 27th wedding anniversary on Sat 25th October we decided to go to a Luxury Hotel and Spa  and treat ourselves so I booked us into the MacDonald’s Houston House Hotel and Spa and booked spa treatments for us both.

I had to prepare with the Fibro/M.E so I tried my best to rest Tuesday and Wednesday but when I woke up Thursday Morning I was in terrible pain and wanted really to go back to bed. But we packed up and left home at 11am. we drove up to the Premier in stopping on the way twice and got there at 4.30pm. I was totally wrecked and in severe pain. I had a sleep. Norman had a voucher for money off Loch Fyne fish restaurants but the restaurant was in the middle of Edinburgh and we were a half hour drive away. There was no way my rebelling body wanted to sit for another half hour in a car, sit in a restaurant and then come back again, so we ended up at the Beefeater attached to the Premier inn. Not exactly fine dinning but it was edible!! I was looking around at the number of families eating there who weren’t staying at the hotel. They must have very low expectations in life if they thin a Beefeater is a good night out!!

I slept fairly well and Friday was Zoo day! we arrived at 11am at the zoo. It most definitely isn’t suitable for scooters or wheelchairs. Its built on a very steep incline. They do provide a disabled van which you can put your scooter/wheelchair in and be driven to the top of the hill. I could really have done with it staying with us all day and driving around!

The zoo itself isn’t very good when you’re used to Chester zoo. There was 1 tiger and 1 lion no elephants, no Orang-utans-my favourites (possibly coz the babies remind me of sam and a new born!!!!). we didn’t see the lion as he was up a steep slope. We saw the tiger. Then we saw some empty cages which were supposed to contain a panther, a lynx and some other cats.  They were either out for the day having some retail therapy in Edinburgh or they were well camouflaged!! I couldn’t see them!! We came down the hill to see the Pandas which was what I had gone for. But typical. They were both asleep so I saw 1 and half of the Pandas!!! The female was sat up asleep and looked like a stuffed toy and the male was typically asleep on his back with his legs a kimbo, snoring!!! but he was partially hidden so we saw him from the waist down!!!! The penguins were great,I loved them. we also enjoyed the Chimpanzees. One benefit of being disabled is the price we paid to get in! I was a concession at £12.75 and Norman was free as my carer. Parking was free for disabled. If we’d paid the full adult price it would’ve been nearer to £40 which I would’ve begrudged paying. So if you want to see animals sleeping go to Edinburgh Zoo. If you want to see empty cages go to Edinburgh Zoo!!!!

Anyway we went for lunch and went back to the hotel for a sleep. That evening I felt good so we went into Edinburgh to a fabulous Thai restaurant called Passorn-or Angelic Thai. It was delicious and you could choose the amount of heat you wanted in a dish.

I slept like a log that night I couldn’t believe it! I want one of those new beds at the Premier inn. I believe you can buy them but its £1000 so not at the moment!

Saturday was our 27th wedding anniversary and we went to the Houston House Hotel and spa. We arrived at 11am and went to sit by the pool and chill. I had a Seaweed muscle ease wrap. It was Gorgeous!! Aww god, I was in heaven. I had my body dry brushed then rubbed in hot oil. she massaged the muscles and knots in my upper back and shoulders. I was then pasted with grey seaweed mud and wrapped in a tin foil wrap and towels. As I cooked and relaxed I then had a face ,head and neck acupressure massage. It was Heaven!!! . We spent the rest of the day relaxing and sitting by the pool. we had a little swim. I managed 2 whole lengths!!! we had a lovely dinner at the hotel and a good nights sleep. I discovered that this hotel wasnt suitable for disabled folk either. I’d forgotten, other than asking for a downstairs room, to check how suitable it was or wasn’t! The spa treatment was in an outside building and was upstairs-good job it wasn’t snowing!! The restaurant was upstairs too. They did offer for us to eat in the bar downstairs which was very nice, but I wanted the restaurant atmosphere.

Next morning it was breakfast and a drive home. I felt good. I was amazed that I walked around a farm store off the Motorway.

In terms of M.E and Fibro, It was hard, but I worked around it, rested when I could and I feel tired and achy but good. I’m back to not sleeping at home and having awful leg pain. I wish I could afford a wrap every month. BUT I have converted Norman to having a spa day so I’m going to look at Groupon and Living social and see if there are any offers in November.

On Acceptance

On one of the forums I go on we’ve been chatting about accepting the situation we’re in now. I’ve also been thinking about it a lot in light of how ill and limited in activity I’ve been Since Xmas.
I don’t want to sound whingey, whinny, moany and I’m not looking for sympathy but lets look at this. Is it realistic to accept what life is like now? Can one truly forget how it was when life was normal?

11 years ago I was a perfectly ‘normal’ person- (No rude comments about me being ,or not being normal folks!!), Whatever ‘Normal’ means. I didn’t work, but I functioned . we were quite a traditional family. Don’t get me wrong, Mr Cinders has always been a marvellous help around the house, But as he worked and I didn’t we kind of fell into a 1950’s style household with me doing most of the cleaning, cooking and shopping etc. We were very religious in those days too. That is a VERY Long story and one I’m not going into now, But hubby went to Synagogue every morning and every night so most of the child care fell to me.

I got up with the kids in a morning, dressed the youngest who hated school and always put up a fight!, Hubby drove two of them to one school.I drove youngest to his school. Whilst I was down that end near the Kosher shops I usually did some food shopping. I’d often pop into Manchester city centre and walk for hrs until it was time to pick Josh up again at 4.30pm .I could literally be in town from 9till 4pm and love every minute of it.

I did the laundry, cleaned the house. I was very fussy about cleanliness ,not so much tidiness with 3 young children, but I cleaned my bathroom every day and threw buckets of bleach about the place!! I certainly wasn’t OCD about the housework like some of my friends. Once a week I went through from top to bottom.

I cooked every night apart from weekends. I loved cooking. we had a good social life. I made regular dinner parties. I went for lunch with my girlfriends regularly.

Once I’d picked the kids up from school, we did homework, they sometimes had friends over for tea. I took them to swimming lessons, ballet, etc then got them bathed and read the bed time stories. I had been on a few committees including being head of the Synagogue P.T.A at my old Synagogue and social event organiser for The Ladies Circle-the ladies bit of The Round Table. I was part of a group at our Synagogue who cooked for sick and elderly people in the community. I often met myself coming backwards! I always switched off at 9pm on a weekday. That was it!

Imagine then one day you wake up and its all gone. You’re exhausted, so much so that you cant lift a mug of tea or pull a door handle. Suddenly life is turned upside down.

As I sunk into depression Mr Cinders had to take over everything, all the cooking, housework, shopping etc. We got a cleaner and used an ironing service. The kids were distraught especially the youngest as I literally disappeared.

As the depression cleared the Fibro and M.E began. So I never picked up in terms of what I could and couldn’t do.

I need help with personal care-getting in the bath, cutting my toenails ,all sorts of stuff. I can hardly cook. I cant chop veg, I havnt the strength to stand and cook, I havnt the strength to clear up. The same goes for supermarket shopping, ironing. infact every single thing you can think of |I have a problem carrying out the activity.

Its so hard to accept. I have to pace. For example, if we are rarely asked out on a Saturday night with friends I cant do anything Friday or during the day Saturday. we cant plan ahead or even be spontaneous. As I never know how I will be. This winter has been even worse. As I’ve become more ill so friends have disappeared along the way. I don’t know whether they think I’m indulging in it all, wallowing? whatever, but you do find out who your real friends are. And I’ve made new ones along the way who have only ever seen me like this so don’t do the ‘pull yourself together’ routine. But relationships is another topic.

At the beginning of the Fibro I used to be able to walk a reasonable distance. I used to be able to do one activity a day so I could go swimming one day, lunch with friends the next etc and my week was full. it gradually all went down hill so that now I mostly haven’t the strength to use my disabled scooter so I need pushing in my wheelchair. I have to rest for 3-4 days in between activities. I cant travel far as I don’t have the strength. At Xmas we went down to my Sons near Oxford. The 3 day journey put me in bed for weeks.

Its hard to accept being so helpless and reliant on someone else for help. Luckily I am blessed with Mr Cinders who is a wonderful caring man. I am blessed with 3 beautiful children. RAchel cant help, she’s too ill and Josh… well! he’s good at popping into Morrisons to get groceries and he will bring the laundry down and drain pans of boiled spuds etc which I find too heavy. But ask him to clear up the kitchen…!!

So back to the original question. Do you ever accept how life is now. Mostly yes. I count my blessings and I have many as I have said. My condition isn’t degenerative and it wont kill me. But there are days when I rail against it all.I cry and get angry at not being able to do what I want in life. Of living the half life in the shadows

The Ascent of Cinders, on excercise with Fibro and M.E

I havnt blogged for a few weeks even though my head is full of stuff because I’ve been very unwell with the old Fibro and M.E. I’ve mostly been clapped out on the bed in severe pain and feeling frozen and stiff like the Tin Man or Lurch. Its highly unpleasant and very depressing. I’ve been shuffling around like Neanderthal man, with my aching arms hanging down, my back bent and my legs bent at the knees! My knuckles didn’t quite drag along the floor!! I’ve been useless in my role as carer to Rachel. She’s been very bad too, so its been difficult. This all put me in mind of ‘The Ascent of man’ You know the one, ape gradually  evolving into Homosapien, standing fully erect! (no rude comments here please!!) I did try adding a picture here but it hasn’t worked. Use your imagination to picture the ascent of man.

This all came about because I decided to do some exercise! I used to be a member of a gym. Anyway, with all the stress of the last few years and the resurgence of my M.E I wasn’t using it so I cancelled it. I still feel as though I should be doing something rather than vegetating so I came up with the bright idea of using toning tables. if you don’t know what a toning table is its a bed that you lie on and bits of it move so that your legs move, your waist gets twisted. you’re supposed to put some resistance into it to tone up. Of course I didn’t. so I did 4 tables-there were 6 and I did 4 minutes on them- mostly you’re supposed to 8-10. BAD Idea! I am now in the state I’m in now from lying down and moving some muscles and ligaments!!

There are differing views on exercising with Fibromyalgia and M.E. Fibromyalgia can respond to gradual exercise taken slowly at your own pace. M.E often doesn’t respond and exercise can make it much worse.

When I was first ill in 2003 /04 I didn’t yet have a diagnosis, although I thought it might be Fibro. I joined up with the local scheme through my G.P with the leisure centre. It was called BEATS. Obviously an anachronim of some sort ,with exercise in there! I started on the toning tables. I was still driving and still able to walk, but I was very weak and could only manage 2 minutes on 2-3 machines. Over the weeks I built up. Then I started swimming and joined the gym. I was able to swim 4 times a week for 20 minutes a time. I could walk from the car park to the changing room. then from the changing room to the pool and then onto the hydrotherapy pool and back and I could carry my own gym bag! Then I stopped swimming and did yoga and Pilates 3 times a week.

I’d started to deteriorate by the end of 2006 and needed a walking stick. Then I started swimming again with a neighbour but it was a struggle.

In 2007 I got my Fibro diagnosis and was referred to what was laughingly called The ‘Energy For Life ‘clinic (you can see its worked!!). This was a whole morning of sitting in a dinning room/school type chair, which in itself was agony and doing some CBT and circuit training. We had to exercise everyday at home as well. This went on for 8 weeks. It was hard work and in the long term didn’t help very much.

By 2008 I had to stop swimming. I could no longer walk, I needed a wheelchair to get out and I didn’t have the strength to carry my own gym bag. This is where THE FED came in with my lovely carer. after looking after my dad for 2 years the strain took its toll and I deteriorated even further and the M.E overtook. Unfortunately it all coincided with my late M.E diagnosis and looks like I was told ‘you’ve got M.E’ , therefore behave like you have!!!

So here we are today, I am not exercising outside the house at all. I have a CD from the Oregon university Hospital who are researching Fibro and have a DVD of exercise for chronic pain. I do this sometimes.

I seem to be on a downwards slide. The stress of the last 4 years has really taken its toll. One of these days I will be able to walk tall again !!

I was once ‘Normal’. How it all began.

People often ask me how does one get Fibromyalgia or M.E? Fibro tends to come from a trauma, be it a car crash, mental health trauma, surgery. M.E tends to start as the result of a viral infection, but not always. CFS or chronic fatigue syndrome, which we call M.E in the U.K can start from mental health problems, or no real reason.

My story is rather convoluted and not clear cut, but here goes. lets set the scene.

I have always suffered from panic disorder, giving me panic attacks and anxiety. It tended to make me run around like a clockwork mouse doing stuff and not relaxing.

Once upon a time I was a student Nurse. When I first started, on every single ward I went on I got Tonsillitis and I was really ill with it, severe flu type symptoms, tonsils painful and covered in what looked like white chewing gum, vomiting and ‘the other’. As one infection virtually ran into the other they thought I might have Glandular fever.

As I got older it settled down and I tended to get one dose of Tonsillitis a year. So not bad enough to have my tonsils removed.

When Rachel was a tiny baby and I was sat in the nursery feeding her in the middle of the night I had what I can only describe as hot ants crawling up and down my back. I couldn’t keep my back still. it felt restless. I put it down to the usual anxiety and having a new baby and toddler and being tired from the baby. The symptoms settled down and I didn’t think much of it. Then I started getting ,every month, near the time of ‘Aunt flo’s visit. severe pelvic pain, dragging and my legs ached beyond belief. I found that at this time I could hardly walk and I would lie on the bed lying on a hot water bottle dosed up on co-codamol..

I went down the gynae route as that’s what I thought it was all about.

Then when Josh was born I got the awful back burning again. And again I put it down to having 2 small children and a baby and down to my own anxiety.

Following Josh’s birth I wasn’t well mentally again. I had a flare up of the Panic Disorder. My G.P treated me for 4 years then I asked for a referral to the anxiety management classes at the local hospital. For this I needed a referral to a psychiatrist.

I started getting a strange phenomenon. I would be mad busy, living off my nerves for a few weeks, then one day I would literally crash, as though someone had pulled the plug on me. I would be exhausted, sleep for 18-19 hours a day, be unable to articulate and unable to make out what people were saying to me. It was like having my head under water. After 24 hrs I’d recover. The episodes started getting nearer and nearer together and I was taking longer and longer to recover. I put this ‘crash’ down to depression. It never occurred to me that it might be a physical course. The psych that I saw just shrugged his shoulders. great help he was!!!

At the end of 2003, I’d been rushing around like a clockwork mouse again and I could feel a crash coming on. I warned my husband. I’d also had a mild virus for a week. Nothing major, a bit flu’ey, sore throat, a white spot on the tonsils.

I went to bed one night and the next day I couldn’t get up. I had no strength and I just slept and slept and slept. I didn’t even have the strength to lift a tea cup. I started with a very severe depression. I was really ill, self harming. It was hell. My body ached and burned and I had no strength. I felt as though I was an old fashioned deep sea diver in one of those metal suits.. My body was heavy, I had trouble understanding people. it was all muffled and I could hardly speak.I was severely affected by light and noise and had to lie in a dark room with ear plugs in. Josh couldn’t have his friends round making a noise etc. I didn’t sit downstairs with the kids for months and months.

I will discuss the effects that its all had on the family in a later post.

As I started to recover mentally my body didn’t recover. I knew that depression can make your body feel heavy and achy. I knew that some of the meds I was on could do it, But my muscles were burning and on fire.

In 2005, my C.P.N ( community psychiatric nurse) suggested that I see my G.P as she said she was puzzled by the burning I was describing. I searched the internet- (dangerous I know!- ). I knew about Fibro as my cousins wife has it and my Mum had had Polymyalgia which has the same symptoms but is caused by inflammation and is curable. I had the same symptoms as Fibro but not really M.E.

when I went to see my ,up till then, sympathetic G.P, he said to me ‘Its surprising what the mind can make the body think its got’!!!!! WHAT!!!! I was livid. I said to him ,’I cant believe you’re doing this.. mental health patient. what’s she given herself this time’!!!! At this he sort of blustered and said he’d refer me to a rheumatologist at the local hospital.

When I finally got to the hospital 9 months later (!), I was examined by the consultants physiotherapist. To Diagnose Fibro there are 18 tender points on the body, which when pressed cause you pain. The physio examining me didn’t press hard enough. eventually she brought the rheumy in and he poked and prodded me and decided that I had Tendonitis caused by the anti-depressant I was taking, Venlafaxine!. Apparently its a very rare side effect.

In the mean time I was going down hill slowly. I was in terrible pain and was taking my mothers higher dosed Co- codamol. my legs didn’t seem to want to take my weight. I could hardly walk. Our lives were severely affected. I Needed a walking stick when I was out. I asked the G.P for a second opinion and he re-referred me to the original rheumy. The waiting list was 18 months!!!!

I was having psychology at this time and the psychologist was fabulous. My G.P had made it clear he thought it was all in my head and I doubted the symptoms myself. Was I doing this all to myself in order to not have to face the big, bad ,wide world? He convinced me that my symptoms were real and that I should seek a second opinion. he recommended the Rheumy that he was seeing at another hospital. I decided to ask for a private appointment to speed things up. I phoned the recommended consultants secretary. She informed me that he didn’t do private practise ,but that his partner, a Dr PAttrick  did. So I booked in with him. I had accidently discovered the top consultant in our area for fibromyalgia and M.E.

I saw him, armed with my list of symptoms and a G.P letter that said he wasn’t sure how much of it was psychosomatic!!! I was livid with that letter. anyway. The rheumy took one look at my list and said, ‘You’ve got Fibromyalgia’!!! he examined me and confirmed it.  This was  November 2006.

I went back to my G.P and asked for some pain relief. His reply?… @I’m not giving you codeine. You mustn’t have Codeine. just take Paracetamol. Its not serious you know.!!!!! I was so angry with him that I vowed never to see him again.

I went to see another, sympathetic G.P who prescribed Tramadol for me.

I carried on. My life deteriorated gradually and by the end of 2007 I couldn’t walk and needed a wheelchair and disabled scooter to get out.

I was in agony and asked the G.P to refer me to the pain clinic at the local hospital. I saw a lovely anaesthetist, who was very sympathetic and prescribed me Butrans Patches. which are a form of Morphine.

so here we are. I was supposed to be talking about how it all started and have digressed.

I will leave myself at the end of 2007, Exhausted, in pain and needing a lot of help in the house and personally. I’ll discuss the effect it all had on the family in another post and update how my life continued over the next 7 years and my deterioration yet again in the last 2 years

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Hiding in the Dark- Livingwith Fibromyalgia and M.E CFS

I decided to record my feelings on living with Fibromyalgia and M.E/CFS Plus bouts of depression and Panic Disorder. Oh boy this is going to be a cheery read. Get your guns out now, ready to shoot yourselves!!

By the way ,Please do not compare my poor efforts to the wonderful writing of my daughter Rachel. (search; The road to Recovery by smallfry182).

I’ve had Fibromyalgia in my life and in the life of my family too for 11 years. It doesn’t just affect me.it casts it ugly net far and wide and has basically fucked up the lives of myself, my husband and 3 kids. I have had M.E for 7 years but it was only diagnosed in 2012 as , because its symptoms are so close to Fibro I couldn’t be bothered pursuing it. it was only because my poor Rachel was being referred to our local M.E clinic that I asked for a referral too to confirm it. It can help when applying for benefits and fighting the DWP (That’s Dim witted prats )!!!

so, people often ask me what is Fibromyalgia? Its hard to explain. There are no medical diagnoses. Its a case of eliminating things like M.S, Lupus etc.

The symptoms that sent me to my G.P in the first instance were; Muscle pain, intense aching like when you have the flu all over my body, muscle burning. I was on fire ,its pretty awful. Exhaustion, I could hardly walk down to the end of our garden path which isn’t a great long sweeping drive as we don’t live in Downton Abbey but a normal suburban semi. The exhaustion of Fibro and M.E is indescribable. People call it tiredness or fatigue. This really doesn’t explain it at all. Imagine you’ve had a personal trainer who’s pushed you so hard that every muscle in your body is screaming and you cant possibly lift you arm of leg another inch. For those women who’ve been pregnant, you know the kind of tiredness you get? well that’s nothing to what the exhaustion of Fibro, M.E is like. I also get terrible brain fog, My concentration is horrendous, I cant read for long, I loose words, I have sensitivities to light and sound. I cant watch whizzy T.V especially the adverts which seem to whizz and dive and flash. Certain sounds hurt my ears. I find crowds difficult and certain pitches. I have sleep disturbances. sometimes I can sleep for Britain, other times I’m awake for hours, or I seem to nap for an hour, wake up, nap again. its all unrefreshing and I feel like I’ve done 10 rounds with Mike Tyson when I wake up. I get morning stiffness and move about like Frankenstein’s Monster. I get sharp nerve pains and shooting pains, I have a sensitivity to certain smells. especially perfume. Sometimes a friend will come round and her perfume makes me feel sick. It used to happen regularly with a friend of Rachel’s.I have IBS symptoms and I regularly get swollen glands and sore throats. Its all joyous!!!

so what’s a day in the life of Ruth like? We’ll go backwards and start at bedtime Presuming I actually fall asleep, I will wake up regularly for a wee, Age and the fact that I am so dry with all the meds I’m on that I drink like a fish all day and all night. so what goes in has to come out!! infact last year I had to do a 48hr input and output chart for something else. it came out that I drank and pished (Yiddish word for pee!) 5 litres a day!!!

Anyway, back to sleepy time. I can wake up in the night at 3am and then not be able to get back to sleep so I come downstairs and make a Latte or a brew of Redbush tea and Almond milk. I  watch TV, which is absolute rubbish at 4-5 am!!. If I’m in terrible pain I run a burning hot bath. Heat helps the pain. I often don’t fall back asleep until 8am and toss and turn until about 10am. Then I have another burning hot bath, have some breakfast and unload the dishwasher. I come on my laptop. I cant sit for long so I get up and stretch a bit and go back on. Rachel and Josh think I’m sad spending so much time on Facebook. BUT, I’m housebound, I’m isolated and its a way of contacting friends and being sociable. If theres any laundry to go in I get Josh to carry the basket down for me so I can put the washing on.  I sometimes go for a ‘walk’ which consists of me walking down our drive to the beginning of next doors drive and back. Must be 30 yrds if that!!! But at least I’ve put my head out of the house.

In the afternoon I go on or in my bed depending on how good or bad I feel. I watch catch-up TV on my Roku box or something on Netflix. Or I go to bed and sleep.

If I’m up to it I make dinner ,but usually hubby does it when he gets home.

At this point I must explain that in the household we have ,me, hubby of 26 years, Daughter Rachel who is 21 and has M.E so she needs help and 17 year old Josh. Our eldest son Sam lives and works in Didcot, near Oxford and lives with his lovely girlfriend Sarah.

So we have 4 adults in the house, 2 unable to do very much, and one reluctant teenager, so most stuff falls on hubby.

After our dinner I am still exhausted and in pain so I go for another boiling hot bath and am in bed by 8.30/9pm where I watch TV until I fall asleep again.

There are days when I’m sooooo exhausted and in sooo much pain that I spend most of the day in bed and need people to bring me drinks and food. If RAchel is having one of those days too we’re a bit stuck and its like the blind leading the blind.

Occasionally I go out to lunch with friends. I have a lovely volunteer who works for the Manchester Jewish social services, known as The FED. we used to go swimming but I cancelled last year as I wasn’t using the membership so we go for a coffee or lunch.

I cant get out of the house alone as I need a disabled scooter or wheelchair to leave the house. I had to stop driving in 2006 because of the pain, exhaustion, lack of concentration and the fact I’d been put on Morphine for the pain. SO I am alone and isolated much of the time.

I’m on shed loads of medication. the ones for the Fibro are; Lyrica, Cymbalta Slow release Morphine twice a day and a quick release Morphine to top up depending on how Bad the pain is.

That’s it for today as my concentration has now gone.  More to follow tomorrow, I have a head full of stuff to write.