Tag Archives: cps

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.