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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. 
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Birmingham In Bloom

A recent trip back to my homeland brought with it all the joys of spring. After the chaos of urban, concrete Brighton and not a grass verge in sight, endless trees, blossom and spring flowers are a beautiful change. Many of these photos were taken in my parent’s beautiful back garden. Enjoy…

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A adult great tit helps it young fledgling to feed.

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A trip to the stunning Birmingham cathedral never fails to amaze, especially surrounded by the white blossom and last daffodils of the season. 

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Even in the evening rush hour the cathedral grounds are awash with beauty.
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Life with Insomnia

Insomnia is something I have lived with for many years. It really started to hit when my fibromyalgia symptoms began after my accident five and a half years ago but I’ve never been a great sleeper.

As a child I always thought it was normal to go to bed and lie awake for an hour or so before dropping off. I’d frequently have nights where I’d lie awake until gone midnight, which felt so late when I was under ten as you need so much more sleep as a young child. Those days at primary school that followed felt endless, the light from the projector in class (yes I’m that old) burnt my eyes, other children would ask why my eyes were so black and the days felt endless. Days like this usually continued for a few days until my sleep somehow reset itself.

When I became unwell with fibromyalgia my sleep became very erratic. Not only would it still take an hour or so to get to sleep but I’d wake up every hour or two and struggle to get back to sleep. I’d wake up with a jump, or at the sound of the cat meowing in a different room. I’d always been a light sleeper but now the sound of my partner breathing beside me was enough to wake me up.

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I started taking medication that helped me sleep a bit better. Amitryptaline didn’t help me get to sleep as it was supposed to but it did stop me from waking up with a jump a much. This medication was changed to pregabalin a couple of years later to help treat pain but I found it had the most impact on my sleep. Again, it didn’t help me drop off but it made a big impact on the quality of sleep. Once I was asleep, the pregabalin seemed to ensure that I stayed asleep until the morning. At this point I was managing about six hours sleep a night. Not enough, but manageable.

As my health continued to deteriorated and a diagnosis of Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) was made I started to be unable to function after work without a nap. As time has gone on my work days have got shorted and the naps have got longer varying between one and a half hours and four hours as the week goes on. I have found that on days I force myself to stay awake all day and end up feeling exhausted beyond words I have an even worse night. Recently I was awake until 5am after an especially long day. I had been awake for twenty one hours. My new frame of mind is to just take sleep where I can get it as the less I nap, the less I seem to be able to sleep at night.

Over the past few months insomnia has shifted to a new level. I am frequently awake until past 3am when my alarm goes off around 7:15am. The sleep I do get is broken, light and filled with vivid dreams and troubling nightmares. On the three days a week I don’t work I try and let me body do it’s own thing and make sure I don’t plan anything for the morning of those days. This often means sleeping from around 3/4am and waking up at 10/11am. I have read this is common in ME/CFS patients as the body doesn’t produce the sleep hormone, melatonin, at the correct times.

I have been struggling to function on such little sleep despite the fact I thought I was used to getting by on just a few hours. This has lead me to try different things out to try and help. Nytol worked the first couple of times, after half an hour spent hallucinating in bed I had a decent night of sleep. But this soon wore off and now makes not an ounce of difference. Pukka Night Time tablets help me feel sleepy, too sleepy to read, and they help settle me but they don’t actually get me off to sleep. I’ve tried various night time teas with chamomile (which I hate the taste of – I’m desperate), valerian, lavender and a whole host of other things. These just make me get up more frequently to use the loo. I’ve tried night time pillow sprays to no avail. Meditations such as my favourite yoga nidra used to help, but again not any more. I’m at a loss as to what to do and think that speaking with my GP is the last resort. But I’m reluctant to start taking yet more medication, with more side effects, and adding to the list of prescriptions my body has become dependant on.

So for now, I let my body nap for as long as it wants as I know this may be the only sleep I’ll be getting for a while. I find it amazing how the body can survive and continue with such little rest. With my trusty kitty by my side, I’m off to get tucked up in bed and hopefully snooze the afternoon away…

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Photos 1 and 2 – Psychologies Magazine

 

 

 

 

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A Grand Anniversary

This week my wife and I celebrated our fifth wedding (civil partnership) anniversary in style. Our itinerary looked a little something like this:

Credit to Nat Rubins-Lawrie for quite a few of the photos, thanks old bird!

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Unboxing Boxcitement Subscription Box

My first ever Boxcitement box was definitely going to be full of surprises for me. Not knowing much about the boxes I had no idea what to expect. This month the theme was aliens and space and I really enjoyed opening the package up.

As soon as I collected my post I couldn’t wait to get inside to open up the box. I loved the tissue paper, sticker and stars, this is very ‘me’ indeed.

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Everything was carefully packaged, even wrapped up in pretty little paper bags.

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A blast from the past with flying saucer sweets…

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This handy little bag will be useful for travelling or keeping my camera safe in my bag.

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Cute little cards are always a favourite of mine and I can use these for Spoonie Post.

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The box also includes a bunting but I think I might glue these into a scrap book or journal instead.

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Hair grips are an essential for me, and I love the earrings but sadly react to anything that isn’t sterling silver.

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And finally, who doesn’t need stationery to write lists?

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I really enjoyed opening up this months box of treats and I look forward to seeing what mysteries future boxes have in store.

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Clinique Beauty Hall

Yesterday I visited Boots Brighton North Road and was treated to a spot of pampering by Lauren, one of the team. She showed me a selection of lip products and beautifully did my lipstick for me. Luckily for me, it’s currently Clinique Bonus Time in Boots at the moment so I ended up with a few extra travelsize treats which will be perfect for an upcoming night away for my fifth wedding anniversary…

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Taking Medical Leave From University

Deciding to do a part time degree, while working part time, and living with ever changing chronic illnesses has always been tough. I may never have got the best marks but I have somehow managed to complete three full years with the Open University and overall my scores were good.

The latest module started in October and was the first level three, or third year for full time universities. I cannot describe the change between second and third level, it was so much harder. But I found it so interesting having the freedom to independently study and use my research in essays. Despite being persistently behind I achieve the best scores in my university career to date. However it got harder and harder to keep up. As my anxiety greatly worsened at the beginning of the year I found my studies were only adding to the exhausting endless turmoil in my mind. I certainly don’t need help feeling exhausted, and I got to the point when I knew it wasn’t doing me any good, in fact I felt it was being detrimental to my health.

I chatted with two good friends about my thoughts to defer and take medical leave, which gives me the option to return and use the credits I have within twelve years of starting. It took a while to sit with my thoughts to know what was truly the best thing for me, and my health, both mental and physical. It was on the short walk home from a coffee shop, whilst propped up with Sticky (my latest walking stick) that I made my ‘executive decision’ (I always call important decisions executive, I think it gives them a bit more oomph!).

I called the university on Monday, a call back never came, so stressed out and pacing I called again on Tuesday and finally spoke to someone who said I wouldn’t be entitled to a penny back of the hundreds of pounds I had paid for the year. After pressing the matter more, I was told I would urgently need a letter from my GP to state it was is not in my best interests health wise to continue studying. My GP have advised this will take three weeks and will cost me £20. I have never requested a letter from my GP for any reason, not for any type of benefit, not for work, never, so I am saddened and angry I’m expected to pay yet more on top of my taxes and prescription charges.

The first days after cancelling my course and getting those dreaded emails through were hard. I had a sudden realisation at work that I was no longer a student and that it is probably for the longer term, if not for good. But as the days have gone on I feel a great sense of relief, a huge weight feels as if it has been lifted off my shoulders. I am free to use what little spare time I have doing what I love; reading, taking photos, spending time with family and friends. And most of all I don’t have to feel guilty for napping, for sleeping, or for taking entire days in bed with cups of tea, my cats and a steady supply of painkillers because that’s what my body needs.

So I’m not a student any more, and I may never graduate. And that’s ok. Because I come first, education will always be there, and I have already achieved so much despite all the things set against me. So if you don’t mind I’m off to stick my head in a magazine and have another cup of tea.