Tag Archives: spoonie

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.

IMG_4930

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.

UUulpwORSdurneCwR9bjbQ

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.

LAzlcmuxQHe8dSglxvLQ-3068739275-1560791440157.jpg

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.

+s1kw4UYR%iNEh%iyOmCwA

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.

And I wonder if you know How it really feels to be left outside alone

Duvet days

IMG_2425

Baby Lulu helping Mummy out with the guest list at Fabric

A friend of mine from Instagram recently posted the following quote ‘main caption above recently. She is a fellow spoonie, a fellow endurer of autoimmune disease and chronic pain and fatigue. Her post got me thinking a lot about how being so unwell really changes ones relationships in a way that can be really hard to deal with, from both sides. I spend my time either at work or at home, there are no other destinations for me these days. I am too tired, too sick, in too much pain. This is not how it used to be. I have spent half a life time working in clubs, I am a naturally sociable and curious person, I like being out and about, meeting people, talking, eating out. Having fun.

If I thought having baby might curtail these activities (it didn’t really, my ex husband and I just let Lu slot into our lifestyle, with a few less ‘out until at dawn’ scenarios) then it had nothing on that the impact developing fibromyalgia had on my life.

IMG_0024

Pimms in Nottinghill

I understand that at times friends don’t ask me to go places because they know I won’t be able to and I imagine that they don’t want to put pressure on me or make me feel bad when I decline. I cannot cope without rest, lots of rest, so that does put a stop to evening afterwork shenanigans. This has also meant that I don’t make plans anymore, ever because I have had to cancel at the last minute more often than not as my illness varies greatly day to day, I could be fine one day and then barely able to walk the next. I hate hate hate feeling like I have let people down so now I just don’t make any plans. I spend my evenig and weekends with my mum and my daughter. I know it probably isn’t hugely healthy, that I should be with friends, to let off steam, chat, be ‘me’ but we don’t always get to do what we want. I know I am doing my best.

IMG_1779

Lunch at the Oysterage in Orford, Suffolk

I’m not trying to do anyone a disservice, maybe the people who don’t ask me just don’t wat t see me, I can accept that! But for those who do like me, it is really important for me to still be asked to spend time with you, it makes me feel valued and wanted and all those things we are never meant to rely on other people for but we do. Each time a friend invites me to do something, knowing that I will probably say no or cancel at the last minute, it makes me feel really included which is so important when one has an illness that can be so debilitating and isolating.

So please, if you have a friend who is unwell, be it depression or any other illness, please remember, when they say no to an invitation, don’t be hurt, don’t vow to not bother again, it matters that you asked, it matters so so much.

 

And I know its gonna be A lovely day

Mornings are my nemesis, always have been. I am a night owl through and through, from writing uni essays at 1am, to all the years I spent working in the club industry and the long night shifts as a criminal defense solicitor attending police stations to see clients. I long to be up and at ’em at 5am, doing my sun salutations and journalling or whatever I would do with all the extra time, maybe taking over the world. Though of course I would be so exhausted by 12noon that I would need a lie down but that sort of stuff is frowned upon at my work place. My mum, on the other hand, literally wakes up singing, it irritates me beyond belief. The mornings are for the radio, coffee and NO talking.

I have read lots of blog posts about how to have a better morning, which in turn leads to a better day, and I have really tried to implement the things that I think would work for me and my lifestyle – single mum, chronic illness, commute to London, full time job.  I read a very amusing post recently titled how to get up when your alarm goes off and not hit the snooze button, I scrolled down and it literally said – alarm goes off, you get up, done! Made me laugh. None of this setting your alarm an hour earlier than necessary to facilitate the endless snooze button pressing. My uni friend Caroline reminded me recently that I used to have to put my alarm clock on the other side of my room as when it was next to my bed I had been known to turn it off in the fog of tiredness and go straight back to sleep missing my lectures.  So I have started just not pressing the snooze button, believe me I want to but compared to the anxiety of rushing around fearing being later for work, resisting the urge is worth it.

IMG_3040

I make sure my coffee machine is good to go the night before, fill it with water, clean the milk frother out, who wants to be scrabbling around washing up at 5.30am before your first cup of coffee? And that even if the kitchen is a bomb site then I have at least one cup available. I also make sure that any containers I need for lunch are clean. This next one is for those of us who take loads of meds, or who takes loads of supplements. Instead of popping out the 26 tablets I take each morning and risk making a mistake or missing some, I prepare a dosset box every Saturday morning that lasts 7 days. Basically I have two boxes, split into seven compartments and labelled Saturday to Friday and I fill each one with the days tablets so in the morning I just flip open the relevant day lid and into my mouth goes my pills.

I usually have a big glass of green juice first thing as food makes me feel nauseous. A green apple, 1/3 cucumber, small head broccoli, half thumb fresh ginger, half peeled lemon, half head fennel, 2 sticks celery. But I am lazy and have no intention of peeling, cutting etc first thing so I make up portioned bags of the veg three days at a time so I just grab a bag out of fridge, shove it into juicer and bang, breakfast.

I have also spent many a morning searching for my f***ing keys, as I fondly refer to them. So, as simple as it sounds, I now leave them in a bowl on my dining room bookcase, it is their home. As soon as I walk in the door there they go to rest until I need them in the morning.

See, nothing earth shattering, nothing new, but things that mean I don’t start my day in a right grump. So even if the rest of the day is not a super success, after all I can’t control everything, then at least I know my morning started as well as it could have.

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.

img_4804

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.

img_4928

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.”

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

IMG_1687

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.

IMG_1704

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).