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A Day With Fibro and ME (Vlog)

Whilst I will never be a filming profession, hand in my notice to my day job and become a full time YouTuber, or even create anything remotely entertaining, I have had the desire of late to create a video that shows what my typical day off is like.  And so my first video (click the link here) was born. I taught myself to edit in half an hour, spent hours trying to put cover music on it and even longer braving the set as ‘public’ button. So for those of you who are interested (don’t feel obliged) here is my first ever edited video.

It mainly shows me drinking tea, having a rest and sitting with a very protective nurse Trinny on my lap. I hope you enjoy it.

Karen x

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Daily Routine With Fibromyalgia and ME/CFS

My daily routine is far from what it used to be before I became unwell. I can’t do most of my hobbies now (gardening/baking/long walks/running) because they are just too painful and exhausting. I work part time, have had to give up my studies with The Open University, rarely cook a decent meal, and spend most of my time at home resting with a cup of tea, a pile of unread magazines and books (in the hope I will be able to muster up some mental energy to read them) and cups of Pukka Ginger Tea being frustrated about the pile of washing up in the kitchen and the clutter that surrounds me. So I thought I’d write out my routine for work days and days off just to put into perspective what life is really like, even though I’m only thirty (almost thirty one ahhhhh!) and look relatively well.
Work Days – Mon/Tue/Thur/Fri
7:15am: The alarm goes off, I snooze endlessly as I usually haven’t been asleep long.

7:40am: Finally drag myself out of bed, stretch, creak and crunch and stagger over to wherever my cat is sleeping for a morning cuddle. I let her out, change her water, poopie scoop her litter tray and top up her biscuits. She comes first as she is totally reliant on people to care for her. Tea, breakfast and medication, you get the idea…

8:30am: Leave the house to either get my bus right by my house which drops me outside work (its quicker to walk but that’s out the question) or get picked up by colleagues. I have a special pass for the bus that allows me to sit in the priority seats. The bus journey usually involves some funny looks from people who see my pass.

9am-3pm (5pm on Mondays): Work. By early afternoon I’m clock watching as I am struggling so much. Exhaustion set in a while ago and the pain creeps in behind it (and this is on a good day). A lot of the time I get a lift home from colleagues. Absolute life savers!

3:30pm I’m in bed having drunk a glass of water, taken tramadol and the kitty is usually sitting on me purring. Pyjama time has begun.

7pm: Out of bed (later on Mondays) and make the sort walk to the sofa. Still exhausted I’m in great need of a cup of tea. I’ll probably burn myself on the steam or spill some hot water.

8pm: Dinner time. Far later than I would like, and I definitely don’t have the energy to cook. Probably a ready meal, something out of the freezer chucked onto a tray or a tin of soup. Yep, I’ll burn myself again at some point during this short process of heating up crap food.

9:30-10pm; Shower. I leave it as late as possible as it is surprisingly hard work. Getting dry and dressed is exhausting. Take a handful of medication and more painkillers if I know I will be in (increased) pain all night.

11:30pm: Back to bed. I read, sometimes listen to meditation and hope for a good nights sleep.

1am: Still awake…. I can’t get comfortable from pain, my mind is racing but I’m too exhausted to get up. Sometimes I end up dragging myself to the sofa for a cuddle with my wife if she’s not working or getting up for an early shift.

2am: Probably still awake.

3am: Hopefully asleep. But often not.

Days Off:

No routine. I let my body do what it wants. It’ll sleep, snooze and rest, tell me it needs pain relief, when it’s peckish and make sure I leave the laundry, washing up and cleaning for another time (we really need to get our amazing cleaner back but at fortnightly visits it was still so expensive). These days involve endless cups of tea, a chance to flick through the pile of magazines, watch YouTube and stay in my pyjamas all day. I probably won’t go out and if I do, it’s been planned down to the very last details, and I’m probably terrified of the exhaustion that will come with it. These days are all about saving enough energy to work and earn a living. Sadly life is ruled by the need to pay bills and not look after my body and mind.

Picture credit: Meowingtons 

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Exploring The Familiar

Living in the chaotic, cramped and endlessly busy town of Brighton, I rarely get to enjoy the place I live. Tourists and annual swathes of students swamp the streets, seafront and city centre. Parks are packed with people either dancing with fire, smoking drugs, or both. Tourist attractions such as the Royal Pavilion (where I got married, the only bit of quiet time there!) have queues round the corner and are so noisy inside you really can’t get a feel for the place. I’m surprised the pier hasn’t sunk with the sheer number of people fighting for the best view to photograph hanging off the railings and the North Laine is a place where you are invisible and only worth being shoved aside. Oh, the beach. Well, don’t even attempt it on a sunny day. I could go on, but I won’t. Escaping the chaos for a day is a rare occurrence, usually only attempted when travelling with or meeting someone.  Recently I spent some time in London with dad and met my friend Stuart for coffee in Trafalgar Square. He mentioned how he often forgets how he loves being a tourist in London and I have to say I completely agree. Not only do the sights never fail to amaze me no matter how often or how many times I may see them, but I love the anonymity of it all too. Everyone lets passers by go about their day, no invisibility or shoving required, and who knows, you may end up chatting with a tourist or two (my sneezing fit and a family sightseeing from the Caribbean made for quite an amusing conversation). The coffee shops were full, but we still got seats and thoroughly enjoyed many a much needed brew.

I’ve called this post Exploring The Familiar as this is the only part of London I seem to visit with my camera in hand. I love the splendor of Buckingham Palace, the elegance and beauty of the police and military horses, the green and colourful gardens alive with buzzing insects, squirrels, ducks and birds. It’s also very easily accessible and close to Brighton. So despite a very high pollen count and many a sneezing fit that day, dad and I had a perfect day wondering through London, travelling on the Tube and even riding on Route Master Buses.

Here are some of my favourite photos of the day…

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Kikki.K Stationery Haul

Who doesn’t like stationery? We all do, right? Few love it as much as me. So much so that when I found out the kikki.K Birmingham Grand Central pop up store had closed I was beside myself. I’m told by my mom (a very crafty lady who was upset by the news too) that she spent some time composing the text to tell me and bringing herself to send it to over. Whilst I am starting to recover from the blow (something only tea, kitty cuddles and online stationery shopping can cure) I have discovered there is a store in Covent Garden, London, and am planning a trip to Swedish stationery heaven. In the meantime I am signed up to the mailing list and when an email with a 20% off code popped into my inbox I was on the laptop quicker than you could say ‘put the debit card away Karen’!

A few days later I came home to find this box of joy waiting for me.

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I promptly tidied my desk/office space to ensure that my new purchases could take pride of place. Trinny the kitty also helped, if snoozing is a form of help of course.

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So here’s a sneak peak of my order… (try not to be too jealous!).

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As a tea lover I also love a good mug or cup and saucer. I couldn’t resist. This is a perfect size for my mom to use when she visits, I know she’ll love using it too. 
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Stationery!!!
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The cutest stickers you ever did see. Perfect for letters to friends, cards and SpooniePost.
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The elastic on my Meowtingtons 2017 organiser snapped as soon as January hit so this is perfect for keeping all my papers, medical letters and address labels safe and sound. 

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I simply couldn’t not buy these cute little stamps, whilst they are probably aimed at someone less than a third of my age, I’m very content knowing I have these at my desk. 
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They were a little splodgy at first (is that a word) but I think that comes from the ink pooling in the packaging. 
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These are a pack of 50 creative prompt cards. Perfect for a rainy day, bad health day, or just sitting and reading. Once again, I know my mom will love these.  They are so beautifully designed and made they are a joy to sift through. 

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These equally gorgeous quote cards also come with a stand so you can change them up as your mood desires. They also make perfect little notecards or postcards for that lucky friend or family member. 
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The artwork is stunning, very ‘me’. 

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Every online (and store bought) order comes with a little notecard…
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…and I love the thought that goes into them. 

There you have it, one very stunning, gorgeous, cute (and all those kind of words) order. I’m a very happy customer indeed. Next stop, Covent Garden. Go ahead and Google the store, you’ll be joining the queue with me.

Karen xx

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It’s ME and Fibromyalgia Awareness Week

Every week, every day in fact seems to be awareness for something nowadays but this one is one that I feel is really important. Invisible illnesses often get less recognition because you can’t see what effect its having on a person. Here’s a few of my favourite blog posts and websites to help you get clued up about the illnesses I live with and how they affect my every day life.

Meg Says

Action for ME

ME Association

Once Upon A Fibro Time

Cloudy With A Chance of Pain

Fibro Blogger Directory

An of course… my blog!

If you know of any others that you think should be added to the list let me know!

Happy reading 🙂

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Cystic Acne – My Experience

As a teenager I had pretty good skin, apart from the odd tiny spot, eczema was more of a problem, but in general my skin was blemish free. Spots didn’t really become a problem until well into my twenties. But most of them weren’t just normal spots, they were hard swollen lumps under the skin that caused areas of my face and back to swell and become infected. For various reasons I ended up on the pill and my skin improved greatly. Apart from the odd cyst type blemish my skin was smooth and clear.

Around eighteen months ago I had to change the type of pill I took due to migraines and high blood pressure and my skin slowly deteriorated. By last summer I had up to six swollen, very painful, and very big blemishes on my chin at one time, cyst type spots in and around my nose and around my hairline and spots that appeared in hours on my back which were usually infected.  Each of these spots typically has little whiteheads around it as if the infection is branching out. Red wheels and lines also spread out from the centre of my spot across the infected area. The ones on my back can be so painful it’s uncomfortable for me to lie on my back, they required having dressings on that need changing regularly too. All of these spots leave dark pigmentation marks and in some cases long term scarring or recurring cysts in the same place. Each time one springs up the glands in my neck also swell and become painful making me feel even more unwell with cold sweats and mild fevers.

By last June the issue was so bad, so painful, that I called the doctors. At that point my bottom lip and cheek were swollen so I was actually seen within a few hours. I was officially diagnosed with adult onset cystic acne and had the options explained to me. Reluctant to go on yet more daily medication I went for the topical solution and it did help a little. But it didn’t stop them from cropping up. By August the glands in my neck were so swollen I couldn’t turn my neck and ended up on a seven day course of very strong antibiotics. It helped the glands but not my spots. In October I was back at the doctors and a nurse practitioner put me straight on daily antibiotics. Within a couple of weeks my skin started to clear and it was wonderful. No pain to constantly remind me of them, no ulcers inside my mouth, no swellings or redness and no patches of eczema cropping up on top the affected area.  It felt like such a treat!

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Hoping a bit of sea air would clear my skin up. 

Almost six months later the count down to my last few tablets began, over the moon I threw my finally empty packet in the bin with joy, hoping that the nausea, heartburn and god awful taste of the tablets were behind me. Just two days later it had all gone wrong. Hard lumps were appearing under the skin on my back, chin and nose, as well as inside my nose and a lot of sore painful whiteheads in the area too. Thinking the doctors would want me off the tablets longer to see if they had worked I lasted nine days until my face was so red and swollen a quick chat with a doctor left me with another twelve month prescription for the antibiotics. She informed me it was rare but not impossible for them to work after six months so I had to come off them to see.

One of my main concerns used to be how I looked, what people thought of me walking along the street or going to work with a swollen lip and red crusty chin, but I’m long past that now. Granted, there are few photos of me with bad skin as I am more self conscious. and I am trying to improve my make-up skills which proves to be very hard when the skin around the spot repeatedly peels off and dries out. If people don’t like how it looks then that’s their problem. Ultimately it’s the pain which gets me down most, it’s a constant reminder of what my skin is doing, the infection it’s causing. Sometimes it’s uncomfortable for me to eat, drink, and even talk (much to a few people’s delight I would imagine!).

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Last summer a sun tan, some expensive make up, antibiotic lotion and poor lighting stopped my chin from looking too bad. 

I’ve been back on my antibiotics for two weeks and am dealing with two of the worst spots I’ve ever had. Today they have finally started going down and I’m no longer referring to my chin as a mountain range but they are still very painful and I’m constantly aware they are there. So while people may think it’s funny to ask if they can pop my spots, it’s grown old and tired, and besides you can’t actually pop a cyst without some form of surgical intervention until it decides to explode of it’s own accord (too much info I know but I’m trying to be real here).

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The current state of my chin which is vastly improved from the weekend.  There are scabs on the other side of my chin from older lesions.