Tag Archives: fibromyalgia

Chronic Illness and the Employment Trap

Here is a little something I posted on LinkedIn today, I wanted to share it here too as I think it is such an important issue to so many.

The Silent Brain Drain in the UK

I have had a job since I was 15 years of age and I am now 45. I have two Degrees and a Masters. I am a qualified solicitor and now I also have a chronic illness.

I developed my chronic illness about 4 years ago. It went unidentified for some time but my diagnosis is Fibromyalgia, Chronic Pain Syndrome, and Chronic Fatigue Syndrome. There is no cure. I was working full time, commuting into London each day and added to this I am a single mum, but then I became sick. My sickness is unpredictable and I often have to manage it day by day sometimes hour-by-hour, it manifests itself in extreme chronic pain and exhaustion. I’ve had to learn how to manage my illness, I really need to be mindful of how I spend my energy,  as we all do, but my energy is more obviously finite than other peoples. I am able to function perfectly well if I pace myself and put plans in place for this. I can use my brain and work but if I have to commute to my job first then that’ll be my energy for the day, the next few days possibly, already used up. Traditional notions of full-time work, or just work in general, are no longer an option for me, so what do I do?

Flexible working is a hot topic at the moment in the world of work and so it should be. We need to rethink how we as Society perceive the way in which people work. I feel I have a lot to contribute but as I no longer fit into any of the templates available for work I am now being forced to drop out of the system. There are thousands of people in my position and the only way to address this successfully, I believe, is to to have an overhaul of how we work and the structure in which we work. Anna Whitehouse at Mother Pukka is passionate about the issue of flexible working and I believe that for people in my position she is a real champion, also for parents, carers, anyone who has requirements that see them with needs that fall outside traditional work norms.

We aren’t going away, we won’t fade into obscurity just because we are not facilitated, in fact, the people losing out are the employers. We are the silent brain drain. #flexappeal #flexibleworking #chronicillness #silentbraindrain

 

Gluten Free Travel – The Lygon Arms Hotel, Broadway, The Cotswolds

I have been away quite a lot recently. Ten days in Seychelles on honeymoon, a week at home followed by a week in Wilmington, North Carolina with my husband while he was working. Lu, my eight year old daughter, spent the time with my mum and with her dad, who had already arranged to take her away during the Easter holidays which is when I was in America. However, it still felt like an awfully long time since I had seen her properly so I suggested a mini-break for us both, a little adventure just her and I. Oh, the excitement. I took her away to the lovely The Great House at Sonning the year before last for a night and she thoroughly enjoyed it. This time around I chose The Lygon Arms Hotel in Broadway, the Cotswolds. I have had my eye on it for months, in fact, I made enquiries about having my wedding there when it was to be a small family affair.  In the end, we went for a large wedding and held it at Vivien Leigh and Sir Laurence Olivier’s old home in Buckinghamshire, Notley Abbey. Oh how I adore Gone with the Wind, I walked down the aisle to its theme music. And as my husband and I are travelling back to the Carolinas and Georgia at the end of the month I shall definitely be visiting Margaret Mitchell’s house in Atlanta.

As my health has improved (that was then, this is now…) I could now drive for more than ten minutes without becoming exhausted and putting myself out of action for days I thought somewhere further afield would be lovely and the Cotswolds was perfect. We stayed for three nights, and Lu thought it might be nice to ask my husband to stay on the third night. The hotel is child and dog-friendly. I think her request was made mainly so he would bring the dog with him as she misses our mini dachshund, Livia, when she is not around. Also, children can use the swimming pool at the hotel Spa at certain times so Lu was keen to involve as many responsible adults as possible lest I got too tired to take her. She is a very clever girl,  my 8 year old.

We arrived on a rainy Friday evening in May at about 7.30pm, later than planned after a few wrong turns on my part,  and pulled into the gravel drive at the front of the beautiful foliage covered hotel on the main avenue in Broadway. We were greeted by the most charming chap dressed in country casual jeans and blazer and having explained our tardiness for our dinner reservation and the tired 8 year old he arranged a speedy check in and then gracefully directed me to carpark behind the hotel which was just in front of our cottage.  Lu wanted to get changed first as she had packed a number of ‘evening’ outfits.  She is her mother’s daughter.

 

The dining room, The Lygon Arms, Broadway.

The dining room, The Lygon Arms, Broadway.

The dining room, The Lygon Arms, Broadway.

The dining room, The Lygon Arms, Broadway.

It was a short stroll across a lane to the main hotel. I had informed them when I booked that I was coeliac (gluten free) and they said that it would not be a problem. It had been noted on my dinner reservation and the wait staff handled it perfectly. We were looked after by a wonderful woman called Lucia, the same name as my daughter so it boded well!  I was taken through the menu and told they were happy to amend dishes if possible. There was a separate menu for children. The dining room itself is absolutely beautiful, both immense and intimate at the same time, a perfect combination.

 

 

Smoked salmon and olives for starters. The Lygon Arms, Broadway.

Smoked salmon and olives for starters.

Post dinner gluten-free fruit crumble and coffee. The Lygon Arms, Broadway.

Post dinner gluten-free fruit crumble and coffee.

Smoked salmon from the adult menu for us both to start, as well as some delicious olives. Steak (Lu) and lamb cutlets (for me) followed and we ended with fruit crumble which was already gluten-free, with ice cream, (me) and coffee (me) on one of the wonderful sofas found in the maze of lounges they have. It was all delicious and not one person suggested fruit salad as a pudding. I felt in very very safe hands. We ate in the restaurant for the following two nights also and it was just as lovely each time, the third night we were in a separate bar/dining area, as we had the dog with us but it was the same menu and service was just as lovely. As Lu is a very committed meat eater she ended up with steak from the adult menu on the third night which she devoured.

Olives, non-alcoholic cocktails and evening wear. The Lygon Arms, Broadway.

Olives, non-alcoholic cocktails and evening wear.

The cocktail list was super, and Lu and I took to having a cocktail in the bar before dinner, non-alcoholic for us both and when my husband arrived I plied him with the most amazing sounding ones on the alcohol-fuelled list. Try any of them, you really can’t go wrong.

 

Pudding on the beautiful velvet sofa, The Lygon Arms, Broadway

Pudding on the beautiful velvet sofa.

We had breakfast each morning at the Broadway Deli, which I had found before we got to Broadway, as its website mentioned that it could cater for those with a gluten allergy and as luck would have it it was opposite the hotel. Full of picture-perfect looking fresh produce, cheeses, jams, pasta and the like, we didn’t have to wait for a table and having explained to the wait staff about my allergy I was told it was the policy for management to take allergy orders which is just amazing. I enquired about the toaster arrangements – toasting gluten-free bread in a toaster that is used for gluten-filled bread renders everything not gluten free!!! – and was assured that there was a separate toaster and preparation area for gluten free orders. I had the homemade beans on toast and two excellent strong cappuccinos as Lu has woken me up at about 5.30am in her enthusiasm to not miss the childrens swimming slot at the spa that started at about 9.30am I think. She had the most amazing doorstep bacon sandwich and tea. We returned again on the following 2 mornings and was not disappointed. Toast and marmalade for me, I was concerned about the use of the same jar by those have gluten toast and they happily opened a brand new jar for me, they make there own marmaladed and conserves which I can highly recommend.

 

The Broadway Deli

The Broadway Deli.

The Broadway Deli Marmalade.

The Broadway Deli Marmalade.

The cottage itself had just been completed so there were no photos of it on the website yet but the rest of the hotel looked beautiful so I was willing to take a leap of faith. I was richly rewarded as it was a beautiful typically Cotswolds stone building, set over two floors, bedroom and huge dreamy bathroom upstairs and living area downstairs with a sofa bed, outside there was a little flagstoned patio area with table and chairs. I had originally booked a room in the main hotel for 2 nights but as it turned out it was the bank holiday weekend and Lu asked if we could stay for three nights and have Malcolm bring the dog for the third, as above. After a few emails, it turned out that I couldn’t have my original room in that combination but the cottage would be free though it was a bit more expensive and I decided to treat us. It also had two of my most favourite things that I almost require now when travelling – air conditioning and a Nespresso machine. I am not very good company without these. The coffee is necessary to take the edge off the chronic fatigue syndrome and the air conditioning is required for the horrid sweaty overheating I experience from my steroids.

The Spa, The Lygon Arms, Broadway

The Spa, The Lygon Arms, Broadway.

The Spa was lovely, though I only saw the changing facilities and the pool, there are treatments available. The pool area is beautiful, with a jacuzzi at the far end and loungers for relaxing There were other families using it when we were there but it was not too crowded, we had a lovely time but I was very grateful for my husbands arrival early on Sunday so he could take her while I read the papers in the hotel lounge. I always worry that I’ll be struck down out of nowhere with the exhaustion caused by my illness, which is how it happens, without warning, so I try my best to conserve as much energy as I can so I can enjoy as much time with Lu as possible and not overdo it too much. The grounds of the hotel were immaculately kept and other rooms faced onto the main courtyard and had little seated areas, there was also a large enclosed garden area with benches that was perfect for taking Livia for a little roam.

The Cotswold Tearoom, Moreton in Marsh

The Cotswold Tearoom, Moreton in Marsh.

Gluten-free sweetcorn fritters, The Cotswold Tearoom, Moreton in Marsh.

Gluten-free sweetcorn fritters.

Gluten-free scone, The Cotswold Tearoom, Moreton in Marsh.

The most delicious gluten-free scone.

As I spend most of my travel research looking for gluten-free places to eat I had found a lovely looking place in Moreton in March, about 15 minutes away called The Cotswold Tearoom which did gluten free cakes, my obsession. Lu and I love popped there for lunch on our first full day. Sweetcorn fritters with avocado tomato salsa for me, soup for her, all items are clearly marked gluten-free. I then had a huge gluten free scone with cream and jam. So delicious was it that we returned on our journey home for the scones and took some home with us. As well as a huge bag of cheese, olives, gluten-free crackers and condiments from the gorgeous The Cotswold Cheese Company next door.

 

Took the dog for a roam in the hotel garden before dinner time. The Lygon Arms, Broadway.

Took the dog for a roam in the hotel garden before dinner time.

Livia sleeping soundly while we ate dinner. The Lygon Arms, Broadway

Livia sleeping soundly while we ate dinner.

Whilst in the area we had a little roam around Broadway and Moreton in Marsh, as well as Blockley, another nearby village and they were just beautiful. Though I left my heart in Broadway. I haven’t spent a huge amount of time in the area but took a jaunt to Cheltenham for the Literary Festival last year. I had booked four events but illness meant I only made it to one but it was super all the same. It is also the area that my husband and I have at the top of our list for moving to as we currently still live in separate houses, separate counties. We both have school age children, it’s complicated.

I would return to The Lygon Arms in a heartbeat, we were all very sad to leave, and though it isn’t cheap it was worth every single penny. It would make an amazing treat, and if I am lucky enough to ever go again I shall go without child or dog so I can take advantage of the adult time in the Spa and maybe a lie in.

Cause it makes me that much stronger, Makes me work a little bit harder

I have been a member of the Spoonie community for a lot longer than I realised, I was diagnosed with a chronic liver condition (autoimmune hepatitis) when I was 24, and will be taking medication to keep it in check for the rest of my life. But as long as my liver behaves itself it really doesn’t have a huge impact on my life, you wouldn’t know I was unwell at all, no time off work, no physical difficulties, but then I became really sick a few years ago and I became a fully fledged member. Hello, chronic pain and chronic fatigue, fibromyalgia and arthritis!

It often feels like these are impossible conditions to live with and I really do mean ‘live’, because at it’s very very worst it doesn’t feel like you are living. You barely exist and often feel like you are actually dying, of pain or exhaustion, of memory loss, of the inability to think at all. It is utterly and completely soul destroying and you don’t even need the wee small hours of the morning to impress upon you the isolation, the unending trauma and the fact that no one at all can tell you when and if you will ever feel any better than you do right now. Draaammmmaaaa! Well, no, not really. I have often heard people refer to different phases of their lives, such as before children and after children, but my life is defined by before chronic pain and after it started. I cannot impress upon anyone how completely my life has been altered by this condition, I have no control over my own ability to function. Told you I wasn’t being dramatic.

But I am a very practical soul and have spent, and continue to spend, a great deal of time reading up about developments in my conditions The British Medical Journal is always a great source of info for latest studies and research and I have seen some of the doctors I have found through this research. I refuse to believe that this is it, that the medical profession has reached their conclusions and that there will never be a better way to treat my illnesses. I have investigated and tried many medications and assistance aids over the years and, while I am not going to write about the meds right now, I thought I would share some of the assistance aid purchases that I have made that have actually helped.

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My faithful Yuyu

First up is the Yuyu, a long hot water bottle that you can sling around your neck, it comes with a tie at each end so it can tie it security around your back and walk around quite happily. Why no one has thought of this before I have no idea but I quite happily wear mine under my coat on old winter days when I collect Lu from school, I suffer from excruciating pain around my right shoulder blade so I can manoeuvre this like a jaunty sash and it eases the pain. Cold is a real issue for exacerbating my pain so this has been a godsend. They are a little dear, starting at £33, but to me, mine has been worth every single penny and maybe something to ask for as a Christmas gift.

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Multitasking. Please excuse my terrible taste in Tv programmes. Catfish is a real weakness of mine.

My second useful item is a bed desk on legs, specifically made to use with a laptop so it has holes allowing the computer to cool down. No more hot laps and wondering if your computer is going to go into literal meltdown as you binge-watch Netflix as sometimes when bedridden box sets are the only thing that one can do to pass the time. I got mine from Amazon.

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All the hospital glamour.

My next recommendation may seem slightly odd but works for me. Soft blankets, the fleecy type, when my skin hurts and I ache inside the thing that helps the most is lying on one in bed and having one to cover me, its something about the softness that I find comforting, a bit obscure, maybe its a infantile cozy security issue that one needs to fulfil when feeling so so sick but it does help my pain. I took one to hospital with me to lie on when I had my last procedure and I tell you it made it more bearable, even if I did get odd looks. I have a few of these ones and a few of these. They are relatively cheap, Primark does good ones as do most supermarkets.

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This doesn’t come with a cover, the thing you can see to the left is part of the Starship Enterprise that Lucia has been making out of a cardboard box.

Next is a lightbox. Being inside so often, not always able to do the obligatory go outside and see the daylight means I suffer from SAD, and actually I have for an awfully long time so to address this I got myself one of these and it has made a huge difference to my mood, I’m not composing poems to the beautiful sun but I am feeling less blah. I pop it next to my bed, in my living room or on my desk, whenever I go it comes with me and I have it one for maybe an hour a day.

Finally, let me introduce you to the thing has diminished my physical pain by the most. It is a neck support memory foam pillow which has a large or small hump, depending on which side of the pillow you use. I don’t really know how to describe it, so when you put your head on it your neck is supported and your head almost dips back to what would seem a much more natural position when sleeping, it is hands down the best thing I have ever bought and the thing that I cannot be without. I take it on holiday with me, I take it everywhere I will be sleeping. See the photo for the humps and a soft blanket thrown in.

It is worth noting that all of these aids are portable and the fact that I can take them with me places means that I can go places without having to reap not only the tiredness of travel but also the setbacks caused by compromised comfort.

Amazon also deserves a shout out for those of us who are housebound or lead lives of unpredictable ability. I pay the subscription for Prime next day delivery and it has been my saviour, my contact to the outside world. Let’s face it chronic illness means our best-laid plans are often thrown into turmoil within a matter of hours and something that was as simple as a drive to shops to pick up a gift for someone’s birthday becomes an impossibility. So it has enabled me to order everything from birthday gifts for my daughter’s friends parties to straw for our house rabbit, all delivered in a timely manner. Mostly.

I have no affiliation to any of these companies but thought others may find this information useful, either for yourself and or someone you know.

It’s better to feel pain, than nothing at all. (Or – What would you choose – excruciating pain or chronic exhaustion?)

Hmm, difficult on so many levels and the fact that it isn’t actually a ‘real’ choice, after all who would choose either? But, for me I would take the pain over the exhaustion since I have luxury of having both. The exhaustion is completely debilitating for me. It is “bone-crushingly, walking through treacle, dragging water up a hill, can’t remember my own name” awful. Don’t get me wrong the pain ain’t great either. It hurts when I move, it hurts when I’m still, the touch of my T shirt on my skin hurts, everything hurts, inside and out and I occasionally lose my vision because of it. “Well, get some painkillers” I hear you cry but really none of them work for me and all I’m left with now is morphine but I am already dopey enough with the tiredness thank you, and I have to be able to drive to get to work. Those pesky bills simply won’t pay them selves!

I am in the middle of what I believe is known as a ‘fibro flare’, an exacerbation of my symptoms that happens for no apparent reason what so ever but then again no one has any idea why people develop fibromyalgia in the first place.

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So, if I accept that things hurt and that is just life, how do I deal with the tiredness? It really does not matter how long I sleep for, I will still be tired, there is no ‘catching up’. I already take an array of vitamin and mineral supplements, including turmeric for the joint inflammation, magnesium for my insomnia and now I have added ginseng for energy. I eat well but the fly in the ointment is when I am tired, the time you should really eat all the best things, it is the time that I can barely wash my own hair let alone contemplate making anything to eat. My appetite wavers a bit and I then crave bad sugar and carbs blah blah blah.

I’ve made reference to the Spoon analogy before and at the moment it is so true. I have a limited amount of energy, spoons, each day. So I have to make choices, during my flares particularly, most days. If I walk up the stairs at work will I be able to have a shower when I get home? as walking up stairs uses one spoon as does having a shower. So I mitigate my circumstances as much as possible and no, exercising and pushing on through does not help, it makes it worse. I know that I felt particularly bad on Monday as on Friday I had a half day at work and I went shopping for two hours to buy my mum a birthday gift and have a nice wander by myself. I slept until 5pm the next day. Now, one can ‘borrow’ spoons to use from the following day but then the next day you have to manage with less spoons. More crappy choices. I think what I really need is a PA and a house keeper to look after me.You know, stroke my hair, tell me I’m pretty,  and that I shouldn’t worry as everything will work out just fine.

Over the last few months I have grown to be genuinely grateful for my mum and having her around me now rarely makes me grumpy (I am clearly much sicker than first imagined!!!), but wow the guilt I feel around my 6 year old daughter is over whelming. ‘Mummy, why don’t you ever want to play with my barbie dream house?’ err because mummy is using all her energy to stay upright at the moment! – only joking, I’d never tell her the truth but she is verging on thinking that I really don’t want to play with her so I have now taken to saying ‘you know how mummy sometimes gets a bit tired? well, I’m a bit tired now so we can do either do activity a) or activity b) but not both, which would you like? but if even giving options is exhausting, alternatively we can watch a film on the good old ipad instead which she loves and I can nap. But it is very obvious to me that I am not the same person I used to be. Having less energy also means one has less enthusiasm for things which is hard because I am usually one of those annoying smiley happy excited people, ‘Spring is coming hurrah’, I adore Christmas and start decorating in October. I am tenacious and passionate and interested in so many things, the world is an amazing place, but I feel a bit like a tortoise, crawling slowly through the day, no time for distraction, just concentrating on finding the energy to put one foot in front of the other.

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When I was in hospital recently I met a lady in her 70s, we were both waiting to collect our meds. She was an academic that had lectured in economics, still bright as a button and absolutely fascinating. She told me that she lived alone and relied on her friends to help her as she had had an accident a while back and had been house bound while she was on the long road to recovery. The thing she discovered was that in order to allow your body to heal physically you had to somehow turn off your brain, stop using all your energy thinking so much, no pondering life great questions in bed alone at two in the morning. She said of course it rendered her unable to have very interesting conversations with people but that it was a necessary part of recovery that simply had to be accepted. Just allow yourself to rest and to heal. She is right, she sparked something in me, it was almost a permission to allow myself to concentrate on healing my body without feeling like failure. I saw with great clarity that while my body was poorly I had been busy trying to prove that my brain still worked and I could have interesting  informed conversations and still had lots of jolly clever ideas to share. “See, see, I am more than my failing body”…..I see how desperate I may have seemed. Maybe instead of worrying that other people would judge my abilities now that I was poorly, I should stop judging myself. I’m still me, just a hazier version of me and one that needs to lie down more often than I used to but, as my Irish mammy would say “sure, it could be worse.”

We’re not broken just bent

So, I got my fibromyalgia diagnosis earlier this year when things were just awful health wise and it has been with me ever since. I have done a lot of research, spoken to lots of doctors, sought advice from social media and this is what I have learnt;

Fibromyalgia is a disease that affects the central nervous system.

There is no cure.

The main symptoms that I personally experience are exhasution, chronic pain, joint swelling, insomnia and brain fog.

The pain never goes away.

Powering on through the tiredness is not the thing to do.

If I rest for a few hours in between tasks I can get things done.

I have a full time job and cannot rest between tasks.

I have a small child   – see above about rest.

I am a single mum – see above about rest.

I am doing a phd – see above about rest.

I rarely get very much done.

Orange juice makes the swelling and pain worse.

Refined sugar makes me hurt and bloats me up.

Aromatherapy oils in my vaporiser and massaged onto my painful bits really helps.

Dry heat helps (another holiday to Grenada for health purposes?……).

I am allergic to lots of pain meds.

I feel very guitly abut not being able to do simple things.

I feel like a failure as a mother and as a friend and as a girlfriend.

I have to cancel plans at the last minute because I just cant manage to do them.

I have stopped making plans.

 

My week in pictures

Monday

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My mum got a teeny tiny puppy – a blue chihuahua called Finn.

Tuesday

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I was taken for dinner at Le Manor aux Quat’Saisons. It was all types of amazing.

Wednesday

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As I knew i would be tired after last nights dinner I sensibly booked a days leave from work so I could rest. Pathetic, huh? That’s Fibromyalgia for you, your life is not your own.

Thursday

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Baby Lulu went on holiday to France with her dad and drew this delightful picture of her and I with Livia the sausage dog. Hmmm.

Friday

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At work, a hot sweaty mess.

Saturday

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I puppy sat my mum’s Chihuahua, they are actually playing in this photo. They  played and played and played.

Sunday

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Made Lorraine Pascale’s Gingerbread pancakes for breakfast. We have them every Sunday but I usually omit the spices and add vanilla essence as the children prefer it but as we were child free we had the proper grown up version with squirty cream and maple syrup.

 

 

Sunday, Sunday

NB I wrote this over a week ago but was too tired to post it – quelle surprise!!! Here its is anyway.

So, I made it through my first week back at work unscathed – well it was fours days really. Work itself was fine but on Thursday lunchtime I got the phone call from the school every parent dreads ‘your child had fallen off the climbing frame and banged her head’. These things are sent to test us, so my mum was dispatched to collect her and I jumped on train from London and met them at home. Lucia had a nice big bruise but after the ‘can you tell your name? do you remember the accident? Can you count to 10?’ she was deemed ok and so spent the rest of the afternoon watching the Ipad and eating ice cream. Phew.

I was so exhausted by then that I went to bed at 5pm, woke up to eat dinner in bed and then fell asleep agin, I woke for work at 6.30am and felt like I could sleep for the rest of the day. Getting up was hard, really hard, the exhaustion and the constant pain in my wrist, hands, arm and neck are tiring in them selves. But I did it and that’s the important bit. It made we worry though, I had been back at work effectively for 2 1/2 days and I was a physical wreck, this is not boding well.

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However, when I got home on Friday my Tens machine had arrived, all that hope I was placing on a tiny little item, surely I was heading for a fall? but no, I love it, it is amazing, I’m still taking the pain killers but the machine is so effective on my hand and wrist that I am quite amazed. How could something so cheap be so effective? I don’t know and I don’t care, all I know is that it is and I love it. People will stare, but that is not the sort of thing that bothers me anymore, believe me it really used to and that was when I was fine and well! Age and illness frees you somewhat from those thoughts, for me anyway. The machine sends little electrical currents through the pads stuck on your body, it does feel odd, a bit tingly, and sometimes it can be uncomfortable so I turn the strength down but goodness is it effective, I cannot recommend it enough. I have the wonderful @curlyb56 to thank for pointing me in the direction of tens and to this particular machine, she is fast becoming my ‘go to’ gal for all things chronic pain related so massive thanks and kisses to her.

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I spent all of yesterday in bed resting, watching Netflix and just ‘being’, but feeling really really grumpy, in such a bad mood, just looking for something to screech about, my poor mum she gets the brunt of it. She stayed to look after Lu for me and brought me dinner in bed again, she is lovely and kind but does drive me mad.

Today its just Lu and me, so far we have watched endless Youtube videos of Lu’s choice, mainly involving disney princesses while the puppy continues to teeth and chew everything that isnt above waist height but the sun is shining, sort of and I must take them both out for a walk soon. A new week looms and the fear I have re exhaustion remains but I know I am doing everything I can to ward against it interfering in my work life but that in itself makes me worry, what if my best isn’t enough????

 

Ooh aah just a little bit, oooh aah a little bit more

Hello world, it has been ages since I last blogged and it hasn’t been due to lack of desire but merely because I couldn’t think of anything to write about that may be of interest to anyone, including myself. I’ve been off work poorly again with my latest diagnoses of fibromyalgia and am still waiting for my Pain Clinic referral so each of my days are a bit like groundhog ones. I am exceptionally tired, constantly. If I do nothing but rest all day I am beyond tired and could sleep for days, if I do ‘things’ then I am physically exhausted by 5pm and can barely speak. This is the most difficult illness to manage that I’ve had to date, in my mind anyway.

The generally accepted wisdom is that exercise creates energy so off to the gym I go for gentle exercise, I pace myself but the next two days are always a write off, this illness isn’t one of those that works that way and I find it incredibly frustrating. I feel like I am constantly having to think three days ahead all the time. If I go for a swim today will I be able to get up tomorrow to take Lucia to school? It goes against everything I am, I am a single mum, with a full time job, a puppy, about to commence a Phd, I am the one that does lots of stuff, and I enjoy that, I fit it in and I manage but Fibromyalgia is standing on the sidelines mocking me. If I am planning on driving anywhere I have to consider that I won’t be able to take my painkillers as I cant drive on them, so I have to calculate how long it will be until I can take them and then accept that I will be in a lot of pain for that time.

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I massage my hands and knees and elbows with frankincense aromatherapy oil before I go to sleep – its good for inflammation. I take turmeric and ginger tablets, as well as a B Complex (can help with mental health), primrose oil for ‘that’ time of the month and cod liver oil for healthy everything. I have fresh juice each day with fresh ginger, I have a smoothie with berries, soy milk, banana, nut butter, dates, a spoon of acai, and a spoon of maca for energy. I have overnight soaked oats with chia seeds and linseed for breakfast. I drink water – though I hate it. I am doing the things that I should, and these are things I like. My mum bought me up eating tofu and brown rice in a time when people who did that were thought of as cranks (anyone remember the restaurant Cranks? amazing baked potatoes rolled in oil and rosemary before baking). I take the puppy for walks in beautiful locations that feed my soul, I’m trying my absolute best to ignore my cravings of Cadburys Big Chocolate Buttons, but I am also being kind to myself,.I am lucky that I have positive people in my life, my daughter is always the light at the end of the tunnel, she is my joy personified.

But, isn’t there always a but, I am back to work tomorrow and I am frightened. My biggest fear has always been the inability to cope. In my mind if I can’t cope then that’s it, game over. Like a house of cards, it will all come tumbling down around me. And I am feeling guilty, all the time. Guilty that I am tired and don’t go to the gym everyday, guilty that I am tired and am not up with the lark chasing the day, guilty that I let Lucia eat her favourite meal of fishmongers and chips everyday because I don’t have the energy to try and make her eat something I have created for her, guilty that some times I am so tired that I don’t have the energy to argue with Lu and I let her skip her homework for a night, guilty that when Lu wakes up at 6am on a Saturday morning I give her the iPad to watch so I can get some more sleep, guilty that when her dad collects her every other weekend for her Saturday night stay that I am relieved that I will be able to go to bed and not have to cook or play or have a bath if I don’t want to, guilty that I bought plants at the school fete and they have been sat in their pots for days because I am too tired to weed the veg patch and plant them, guilty that I want to be bathed in my pjs (thats if i have actually got out of them) by 7pm and that I just can’t muster the energy to go on a ‘date night’ with my partner. I worry he’ll think ‘this isn’t what I signed up for, what happened to the woman I met two years ago?’

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This illness is depleting me, the ‘me’ of old is fading, I’m not a good mum, friend or partner anymore, I don’t have the energy and to ask other people to live with that is extremely selfish of me, it makes it seem like the ‘Miriam’ show, and that’s not what I want. It isn’t the ‘me’ I want to be, it isn’t the ‘me’ I was  months ago but I fear it will be the ‘me’ from now on. I have become defined by my illness, restricted and curtailed. None of my other illness have ever done this to me, though they are medically more serious, but whats a liver transplant between friends.

But I must tell you a secret, something I quite dislike myself for feeling, something I am really unhappy about and that is how much weight I have put on. I hate that it bothers me, I hate that I cant seem to lose it, it makes me feel like I have no self control, why can’t I make myself exercise everyday? why can’t I curb my appetite? why does my weight bother me? It is so superficial but when I see myself in the mirror, which I avoid like the plague, I think ‘oh god, you look bloody awful’. If I was talking to a  friend I would say ‘FFS get a grip, you are dealing with so many things, the steroids increased your appetite, you suffered  a bout of depression, you are suffering from chronic fatigue, shut the fuck up abut your weight, you are a strong woman, a mum to a wonderful daughter’ but for the first time ever in my 42 years I am thinking ‘If I was thinner I would be happier’ I mean, what the hell??? Anyway thats my shameful secret, I feel like a failure.

Apart from all of that I’m ticking along quite nicely, you?

Ps the blog title refers to using up my energy a little bit at a time, slightly convoluted but I’m feeling the Fibre fog at the mo.

I just don’t know what to do with myself

So, for the last few weeks I have been feeling worse than ever. I realise it seems like I have been sick for ages, and I have, but after a few months of tests it was decided I had Sarcoidosis and after four months off work I started relevant meds and went back to work. The first couple of weeks were fine, I felt energised after making sure I has enough rest, good food, supplements, meditation and lots of water. Then, it all started to go down hill, I was really worried that the sarcoid was starting to get worse again so off to the doctor I went, she arranged an emergency appointment with my Rheumatologist, a few tests later and she talked through my symptoms, chronic pain, extreme fatigue, swollen joints, weight gain and she told me I had Fibromyalgia. I had already started crying at this point, I rarely cry, but the despair was starting to engulf me, I was sick and tired of feeling sick and tired and here was another bloody illness to manage. The list so far in order of diagnosis starting from when I was 20;

Osteporosis

Coeliacs Disease

Bursitits

Autoimmune Hepatitis

Hypothyroidism

Sjogrens Syndrome

Sarcoidosis

Fibromyalgia

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The last four have arrived over the last five months. I am usually so in control of my illnesses, a responsible patient, participatory in my treatment, a really honest and open dialogue with my doctors, I know my illnesses inside and out and they don’t frighten me. I listen to my body and take all in my stride, I’ve never been the type for hysteria.

The Sarcoidosis diagnosis was a relief as we had been considering cancer, Sjogrens is liveable with, dry eyes,mouth etc, the Hypothyroidism is a little more complicated but I am monitored and all is in is order but the Fibromyalgia – I’m not so keen.

The majority of my illnesses are chronic, and those ones are in remission, apart from the Fibromyalgia and from what I can lean it is a difficult one to manage. There are no medications or cures, I have been referred to the Pain Clinic to discuss subtitle medication to enable me to function, but as is always the case nothing is that straightforward. I am allergic to some of the main types of pain meds, the one that don’t really interfere with everyday life, so they are off the menu. Now I shall have to wait and see what they can suggest. I have been signed off work for two more weeks as some of my meds have been adjusted to compensate for the Fibromyalgia and the pain and exhaustion is overwhelming.

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I cannot imagine living like this for the rest of my life and I am panicking like mad, I’m not used to feeling so out of control, usually I just knuckle down, learn all I can about my illness, my body lets me know what I need to and I get on with it. This time its not that simple, nothing I do makes me feel better or more able to cope, I can’t sleep as my mind is swirling, being inside doesn’t help, being outside doesn’t help, reading about it doesn’t help, being with people doesn’t help, being alone doest help, reading, radio, tv doesn’t help,the meds don’t help, and I am worried about the future. What if I become too sick to work, I am a single parent, how can I pay the mortgage? I’m meant to start my Phd in September having deferred it from the beginning of the year due to the Sarcoidosis, what If I’m too sick to start it? My daughter is five, I don’t want her to think of me as ‘sick’ or having the mummy that always needs a ‘rest’. My mum was a single parent and she was sick a lot when I was little and I remember how frightening that was for me. I am becoming depressed, I know that, I can feel it, but I cant seem how to crawl out of the deep well I am falling down, time is running out, I can’t afford to spend what little energy I have trying.

Is this it? The pain may be manageable but the exhaustion? It is crippling and completely uncontrollble. On social media those suffering with chronic illness use #spoonie to identify relevant tweets, this is based onthis article written by Christine Miserandino,  I highly recommend you read it, it is the best explanation I have ever come across (and it uses spoons to explain everything – brilliant).