Sometimes, lovely things happen… Thanks to Saal Digital this time!

As a model, I get lots of questions about my photos. One that pops up again and again and again is “where can I buy prints of you?”. My answer is always the same, you can’t, but if it’s a picture I own the copyright to I will send you a high res version for you to get printed yourself for a small fee. Quite a few people have jumped at the chance every year, and it inevitably leads to a second question, “which print company do you suggest?”. Until now, I haven’t had an answer.

A few weeks ago​ I was offered a chance to trial Saal Digital. They are an online print company, based in Germany and the UK. They wanted to send me a piece of wall art in exchange for an honest review. I thought about it for a while, what if I didn’t like them? What if the service wasn’t good? And eventually took the plunge. 

I chose to order a framed 20×30 inch canvas print. I chose my husband’s favorite photo from out wedding (I didn’t want a large picture of just myself!). The ordering process was easy, the photo uploader and the preview  I was great and very fast, although I had a slight hiccup when it got to the checkout process. It just wouldn’t confirm the order, so I sent an email to the company and got a response within 2 hours (very fast indeed!). The mistake was mine and they talked me through getting it right. Once the order had confirmed I had an email pop through quickly, followed by one to say it had been dispatched two days later. Again, very fast indeed!

The postage took just a few days and I was very excited to see it when the courier knocked on my door. After ripping open the cardboard, I saw this…

The frame is held in place by vacuum packing, a clever little way to stop it from moving around and getting damaged. The little black dots are a complimentary hanging kit.
I opened the package carefully, and turned the picture over. It is beautiful.

This picture doesn’t do it justice. It is a beautifully​ made picture. The colours are perfectly bright and the grain on the canvas only add to the overall effect. The frame it self is wood and it’s been made with care and skill. To say I’m happy with it is a massive understatement.
To show the size, here it is with my hand.

It fits perfectly, freestanding, on my shelf!

To recap; the ordering process is easy, customer services are polite, friendly and professional, the picture was printed and dispatched quickly, it wasn’t damaged in transit and the packaging is excellent, the quality is astounding.

On top of that, the pricing is very good, especially when you consider the quality.
Without a doubt, I will be suggesting Saal Digital to anyone that asks me where to get photographs printed in the future. I’m even looking at other items they make to buy in the near future.

You can order here – 

http://www.saal-digital.co.uk
*For clarity, I received this print in exchange for an honest review. Good, bad, indifferent, all they wanted was my honest opinion in exchange.*

Advertisements

This Too Shall Pass

I haven’t written a post in too long. 

Unfortunately, that’s because I had one of those months where everything happened at once and it all happened at the last minute.
I had a photoshoot with 48 hours notice, that meant a lot of travel. I had barely enough time to sort myself out when I was travelling again and off to another photoshoot with my husband and a close friend. I seemed to get every bug going and had a run of horrible migraines due to the stormy weather. All of that put me onto a bad place with fatigue and I dislocated three fingers and my wrist and subluxated (partially dislocated) my elbow opening a coffee jar last week. It’s been pretty horrible to try and recover from, and I’ve had to force myself to rest up and wait it out.
It’s not all bad though, I had a great experience with the Newcastle hospital system when I saw their pain management team for the first time. The doctor was extremely knowledgeable about Ehlers Danlos Syndrome, and he was explaining everything very carefully to the medical student that was sitting in on the appointment. Hopefully that will help when she meets people with EDS in the future. 
While there is not an awful lot that can be done in regard to treatment of EDS, there are ways to attempt to limit the impact of the symptoms. Physiotherapy helps to strengthen the soft tissue around the joints and attempts to slow down damage and repeated dislocations. This is one of the reasons why I always do as much as I can. I don’t push it, but I don’t stop completely. It means that my muscles don’t waste away. 
The doctor thinks I cope remarkably well, the student was impressed by my knowledge and my resilience, but I’ve been told I totally under manage my pain. I understand that, because I know I do. The painkillers I use stopped having as good an effect a long time ago and it’s been going downhill. I find myself waiting until the last moment to take them, when I can’t take it any more. I use meditation first before medication, mind over matter. But that’s not the best course of action every time. So the doctor has suggested some better options that I can discuss in more detail with my GP. Luckily, I have an excellent GP!
Walking out of that appointment, after spending a whole hour explaining in a stranger how I cope, what my days are like, what levels of pain I have and when, how I relocate my joints myself, how many times I’ve visited A&E, how many specialists got my diagnosis wrong or ignored me over the years, when my pain started (14) and why, what treatments I’ve tried over the years, how I pace myself, if I have any support available apart from my husband, what my future plans are…. I realised just how much I do cope with. Just how much it all affects and limits my life, just how much I have lost and had to stop over the years. It’s a lot. An awful lot to be honest, but I’m happy. I’m in a great place in my life right now. My illness and my pain is the only thing I would change. It would mean I could work again, and I would like that, but that’s it. Illness and a career. I have so much now, things I never thought possible when I first became really ill 10 years ago. 
No matter what life throws at you, if you manage to weather the storm, batten down the hatches and wait for it to pass, it does get better. Sometimes, it even surpasses your wildest dreams.
“This too shall pass”

Photo by my husband, at the shoot we had recently.

​It’s Valentine’s day so I’m using it as an excuse to be mushy…

I’m a big fan of all things home made, so today I baked a cake as a gift for my husband. A chocolate cake with peanut butter cream, to be exact. Over the past few days I’ve also  cross stitched a grunge-tastic card for him, using the plaid material I made his wedding tie out of as inspiration. 

I’m currently (impatiently) waiting for him to get home so that I can give them to him. 
He sneakily hid a really beautiful card in my drawer this morning. I found it just after lunch when I went to get myself a sweet treat. He knows me so well! 
It’s our first Valentine’s as a married couple. So, although we are keeping it low key and we’re staying in with a take away and a movie tonight, we both wanted to mark it properly. 
With us, it’s the little things that count the most. The little notes we leave each other, the gifts we bring each other just because we know it’ll make smiles, and the pictures we send throughout the day that we know will make the other laugh. We text constantly, post about each other on Facebook and love nothing more than a good TV marathon, cuddles up on the sofa with the dogs.
Happy Valentine’s dear husband. 

I love you loads xxx

P.s… He just got home and handed me an amazing box of chocolates. We’ve had a piece of the cake and it was a huge hit! Next, Chinese food and a movie. I’m a very lucky lady indeed.

Heading home

​I’m back on that train.

This time heading north, heading home.
It’s bittersweet. My husband is waiting for me, we are eagerly texting each other getting exceptionally excited about seeing each other. I would say it’s typical newlywed excitement, but we’ve had it since we got together over 3 years ago. We text all day, every day. Any time we are apart.
My week has been, well, insane.

I haven’t stopped. I’ve seen my best friends in the whole world. I’ve caught up with family and, most importantly, had lots of cuddles with my little niece. I spent a night watching a friend play music. I’ve seen my Herts-Wife and made plans for something special in summer. I’ve seen my London-Wife and we’ve made all sorts of epic plans for the rest of the year. I spent most of a day in London with my lovely, crazy, cockney bridesman, laughing for 8 straight hours. I had flying visits from truly lovely, gorgeous, friends simply because I was there and in town and able to see them. It’s done my mental health the world of good. It’s filled my soul to bursting point and given me lots of love to feed on when the pain gets to be too much to handle.
But it’s all come at a price. I have been away for 7 nights and I’ve averaged 6 hours sleep a night. I need 9 to function usually. I’ve been running on adrenaline, excitement and painkillers. I’ve almost lost my voice, I’ve dislocated my wrists, hips, knee and shoulder. I forgot my walking stick and had to run out to buy one quickly. I am utterly exhausted, physically and mentally. I am in massive amounts of pain. I just want to cuddle up to my husband and go to sleep. It’s going to take me weeks to get back to my baseline. 
This is the reality of chronic illness. I pace myself as much as I can on a normal week. I rest before I do something and rest again afterwards. I say no. I try to stick to a good sleep routine. Then I go away for a week and a spanner is thrown in the works. I don’t have the time to properly pace myself. If I rested as much as I need to I would have only gone out once or twice in the past week. It’s a choice I have to make in order to enjoy my life. Make it worth living. Sometimes I just have to throw all of the planning out of the window and go for it. I know what the consequences are, I know what the fallout will be, and to me, it’s worth it. There has to be a time when you just enjoy life for the sake of it. If you put everything off, if you don’t do enough, your mental health suffers and you end up worse of than you were to begin with. I have to be choosy, I have to make the right decisions at the right time. I don’t want to make my body permanently worse, but I want to be able to have fun and make memories before that choice is taken away from me. 
So, while I can, I’ll keep doing what makes my soul happy. I’ll enjoy the date days with my husband, I’ll travel to see my parents and my brother and his gorgeous family. I’ll give my niece all of the cuddles I can and I’ll see friends at every opportunity. I’ll take silly photos and I’ll cuddle my dogs tightly. I’m making the memories that I’ll need to keep me going in the future, the memories that scroll through my mind while I’m waiting for the painkillers to work, or waiting for sleep to come. I will savour and cherish every single one of them, for one day, they may be all I have.

Sir Squeebington-Smithe, happily snoring away in his bag on the train next to me.

Train Travel And Why I Moved To The North East

​This week is a very different week for me. I’m heading South by train to see my family and catch up with friends.
It’s a long, difficult, journey. One I have taken what feels like 100’s of times before. It’s bitter sweet, familiar, exciting and filled with memories.
The physical problems with travel are great. I have a suitcase and a travel case for my 3 chihuahuas (yes, they are travelling with me!). Where possible my husband helps me onto the train. He carries my bags and puts them on the train for me. If he can’t, the train station staff are amazing and they will always help. I try to travel 1st class when I can afford it (seat sales are a godsend!). The seats are larger, more comfortable and there are many more staff available to help me. My parents (or booked station staff) help me off of the train at the other end. The jolt of the trains movement is horrible and I have to stand up and move and stretch often to stop injury. A harsh bump popped my hip out of place on one journey. The journey itself is tiring and when I get to my parents or home I need some time to rest and regroup. Even though I’ll be away for a week this time, I won’t have much chance to rest. My week is heavily booked with friends and family visits. I haven’t seen anyone since October! Once I get home in a week, I’ll have to go into hibernation for a while to try and recharge and get over the inevitable fatigue and injuries. But it’s all worth it and it’ll do my mental health the world of good to be busy and having fun. 

It was 5 years ago this week that I took this same train journey and met my husband. I went to the North East for a photoshoot. I was staying at the photographers house for the weekend. He had gone to bed early and left me in the living room watching TV, when his housemate came in, tipsy and happy and shocked to see a random stranger in his home. He stopped to talk to me and we bonded over some obscure English metal bands. We found out that we had very similar music tastes and a lot more in common. He went to bed, and I didn’t see him again that weekend. A few days later he sent me a friend request on Facebook and we would chat every so often. That was Jan. 2012. In August the same year I went back to shoot with the same photographer, along with another model and a great jewellery designer. The weekend didn’t quite go to plan, but it meant that I got to spend a lot of the weekend talking to this guy. He spent a whole day making everyone tea and acting as a general dogsbody while wearing a monkey onesie! 
We talked more online after that, but I didn’t see him again until late October 2013. I get again went up to the North East to shoot with he same photographer, but this time I arranged it with this guy that we would spend some time having a proper catch up. We talked an awful lot that weekend. He was having some personal problems and I was in the right place at the right time to help him through it. He took me back to the train station on the Sunday evening and out of the blue he kissed me. I got on the train in a daze. We text each other the whole journey. By the time I got home we had made arrangements to see each other again. A month later we became a couple. 
It was a very trying time. We fell hard for each other and that scared and excited us in equal measure. His personal problems continued, adding me into the mixture made it worse to begin with, but eventually it settled down. By January 2014 I was travelling every two weeks. Two weeks with him, two weeks at home. By summer I didn’t know where my ‘home’ was anymore. Being without him was hard, and he tried to find a way to move south to be with me full time. Unfortunately, it wasn’t going to happen. Over Christmas 2014 we made a very difficult decision. I would move to the North East. 
Moving meant leaving my support network behind. My parents had been my carers for the previous 8 years. Supporting me though various health crashes, diagnoses and hospital visits. My friends were utter diamonds, people I had spent years and years with, that knew me inside out. I cannot convey how hard it was to tell people what I was planning. Luckily, everyone understood. Anyone that had met the amazing guy I was moving for was 100% supportive. They had seen me grow and change and be so happy with him. They had also seen me retreat into myself when he wasn’t around. 
It wasn’t just a decision based on the South’s impossible job market. This was a practical decision about housing too. We started looking over Christmas and quickly made a short list of properties to look at. We settled on the 5th one we saw. A huge 3 bed flat that we bought for £42k. In my home area, a property of that size would cost over £300k. So, we bought it. The lady selling it was amazing, she helped us all along the way and I still talk to her on Facebook sometimes! 
I moved to the North East at Easter in 2015. 

He asked me to marry him in May 2015, and we got married in the North East in October 2016.
It was the best decision I ever made, being with my husband full time. He has done wonders for my health simply by making me happy. When you are chronically ill, being happy is more important than anything else. It makes the pain bearable, the fatigue worth it. There are a lot of things I can’t do, I spend most of my time in bed or on the sofa while he’s at work all day. It can be extremely isolating and lonely. It’s very hard to make friends in a new city when you can’t go out very often. I have two wonderful close friends up north though, I adore them both, and my husbands friends are all truly lovely, caring people. I just wish I could spend more time with them! 
I may not be able to do the house work, or be the perfect house wife with dinner on the table when he gets home, but I can be his best friend. I can be there when he needs me and I can be his partner in crime. We make it work for us. He never makes me feel guilty or less of a person due to my abilities. I do what I can. Sometimes that’s cleaning the kitchen and cooking dinner, sometimes it’s putting my PJs on and brushing my teeth, sometimes it’s cuddling up on the sofa with him to watch films all weekend. The best part of my day is when the dogs get all excited because they’ve heard our front gate click and his keys turn in the lock. 
My love has come home.

​I Want To Talk About Pain

​I want to talk about pain.
I don’t remember a day without pain in at least 12 years. Before that it happened a lot, usually related to weird injuries that in hindsight are explained by Ehlers Danlos Syndrome. Now, I live in permanent pain. Day in, day out. The levels change, but it’s always there. 
Pain is subjective. Everyone feels it differently. Everyone has different experiences of it. You can’t compare one person’s pain to another’s and it’s wrong to try to minimise someone’s pain. That goes for emotional pain as well as physical pain. It’s very hard to try to explain what my pain feels like. It’s deep, burning, intense and often impossible to ignore. It’s never ending. It has peaks and troughs and it changes from hour to hour depending on which joint moves out of place and which muscles, ligaments and tendons are under strain. 
The best way to describe pain is by using a scale of 0 to 10, 10 being the very worst you can possibly think of. This chart should help.

I live at around a 4-5 on this scale. The pain is always there, but I can work around it and ignore it with the help of painkillers when necessary. On a bad day, I go up to a 7. On these days I can’t ignore it, I have to take painkillers and it severely effects and limits my life. A 7-8 is often the aftermath of a dislocation. During the dislocation, my pain hits a 9. It is excruciating and all encompassing. 
The other night, my pain hit an 8 and I don’t know why. 
My lower back had been at 6 all evening. I couldn’t get comfortable, I couldn’t think straight and I was extremely fed up. Nothing I did eased it, my usual arsenal of painkillers, heat, cold, cushions, stretches and light massage was redundant. I hadn’t hurt myself and I still can’t pinpoint why it happened.
My husband and I went to bed, I took more painkillers, and I hoped I would sleep. It wasn’t going to be that easy. I couldn’t get comfortable and the pain spiked to an 8. At 7, I start to cry. Usually quietly and mostly internally and I often cry myself to sleep. At 8+, I get very emotional. At this level I just break down. Laying next to my husband, I lost it. Full on snot bubbles, heaving, ugly crying, mess. No silent tears in the dark, I think my neighbours could hear this wailing! 
My husband was amazing. He held me, rubbed my back gently and let me cry. He didn’t say a thing. He created a safe space for me to just let go. 
Eventually the pain subsided enough for me to relax a little. My husband laughed with me at the snotty mess I’d created and helped me to clean up. He held me until I finally fell asleep.
I spend every day being so strong, keeping it all locked away. I have to, just to keep going. When you’re in pain all the time, you reach a point where you just have to find a way to work with it and work around it, otherwise you won’t have a life to live. You can let the pain engulf you and destroy you or you can find a way to live with it, work with it. I live with it. It means I’m extremely aware of everything happening within my body. I’m aware of every physical and emotional change and I deal with it as soon as possible. That means talking about it, a lot. It means that I have key words that I use with my husband and friends to let them know what’s going on, it means talking for hours to my mum where both of us talk about our pain and our troubles (my mum also has EDS and other issues, so she understands more than most). 
There are times when the pain gets the better of me. It can’t be helped. Tempers fray and I snap at people. I don’t mean to, I really can’t help it. It can make me very different to live with and talk to. Keeping a lid on that takes up an awful lot of energy. Sometimes, depression sets in. My life is not what I wanted it to be. My life has a very slow pace, is very sedentary. I’m very isolated. I don’t leave the house very often, my contact with the outside world is through my phone and the internet. Some days I can’t even manage that. 
Luckily, that side of pain is often short lived. I have my husband and 3 crazy little chihuahuas to keep me happy and keep me going. Nothing quite beats the unconditional love of dogs. 

I am very grateful for what I have. I try to make the very best out of my life and I try to keep it as normal as possible, not just for me, but for my husband, my family and my friends too. They are my life, they keep me going and for that I am forever grateful. 

Laughter Hurts; How To Plan For A Night Out

​Last night I went out.

Last night I discovered that laughter hurts.
My husband and I met up with 2 lovely, close, friends at a comedy club. It’s the first night out I’ve had in a very long time. Actually, it’s the first night out we’ve had since our wedding 3 months ago. I put nice clothes on and full make up. I made an effort to look nice and feel normal. As much for me as my husband. If I look normal, I get to put everything else to the back of my mind and pretend that I am normal. Of course, it’s not that easy really. Pretending involves wearing a mask, and sometimes that mask will slip. Last night it slipped.
I’ll rewind a little. The tickets were booked a while ago. So I knew it was happening and I was able to arrange my time and energy accordingly. 

It went a like this;
Saturday – I hadn’t left the house in 7 days and cabin fever was setting in, so I went into town with my husband for a slow, gentle wander and to a local middle eastern supermarket. He wanted supplies to make one of his epic curries and I just wanted out. We were out for around 90 mins. By the time we got home my legs were burning and I really needed to rest. I spent the rest of the day on the sofa with the little doglins looking after me and my husband cooked.
Sunday – My husband did some washing and cleaning while I washed my hair. I had to do it two days before going out as it takes up a lot of my energy and I’m trying to stock up before I got out on Tuesday. My shoulder slipped out of joint while I was doing it, so I made sure I kept it warm as I rested afterwards. We cuddled up on the sofa and spent the rest of the day watching TV together.
Monday – The day before going out. Knowing that I would be out Tuesday, I had always planned to do as little as possible today. That means eating pre-packaged food, no cooking, being on my feet as little as possible, making sure I go to bed on time and staying on the sofa all day. Days like today are boring. I feel ok, but I have to force myself to do nothing. It’s not easy, especially when you have an active mind, so I cave in and spend some time painting my nails. 
Tuesday – Today’s the day. I wake up feeling a bit off and achy. I think I slept too heavily. That’s never a good thing, it means my muscles get stiff. The first thing I did after getting up was choose my clothes for later. I go with layers, it’s cold outside and it’ll be warm inside later, but my body isn’t very good at heat regulation, so I have to plan for every eventuality. I choose a skirt, top, cardigan and thick tights with flat boots. All black, comfortable and practical, but still stylish. Luckily my husband is working from home today so I can conserve energy and he helps me with food preparation. We plan to leave the house after 6pm, so at 4pm I put my make up on. Slow and steady, that takes me an hour. I rest for 45 mins and put my clothes on just before we leave. For ease and practicality, I plait my very long hair. 
That’s 3 days of preparation, just so that I can go out for an evening. I have to stock up Spoons, so that I have just enough to cover my outing. Yes, Spoons. A lot of people have heard of The Spoon Theory, some haven’t, it explains how chronically ill people use and conserve energy better than I ever could. If you’re not familiar, here’s a link to the explanation by the lady that created it and a picture that will help…
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Let’s get back to that mask slipping.
Everything was going well, I had saved up my spoons, I had a couple extra to use to enjoy my night out. The comedians were brilliant, it was a secret gig and 3 out of the 5 were well known TV comedians, Jason Cook, Chris Ramsey and Kevin Bridges. The chairs were uncomfortable, so I was having to fidget a lot. At least it looks like I’m fidgeting from the outside, I’m actually moving around just enough to release seizing muscles and stretch my back very gently. Towards the end of the first interval, my husband noticed I was in pain. He gently massaged my back and kept asking if I was ok. I said I was, even though something wasn’t feeling good, I didn’t know what it was and I didn’t want to make him worry. I took painkillers, I carry them at all times, and hoped for the best. The pain really hit about 15 mins later. As I was laughing at something Jason Cook said about an audience member, something in my chest popped. I couldn’t decide it it was in my back or at the front, it seemed to hurt everywhere. All I could do was grip my husband’s leg and wait until the second interval. As soon as the lights came up I went to the bathroom, carefully. My husband wanted to come with me, but being the ever independent person I am, I needed to go alone. I got into a stall and used the door to steady myself as I stretched and felt my back muscles looking for what I thought was a muscle in spasm. As I twisted, my lower right ribs popped back into place. The pain was white hot but luckily short lived, especially as it almost made me black out. I steadied myself and waited for it to pass while trying not to be sick. Somehow I got myself back to my seat. My husband took one look at me and made a face I recognise. It’s a quick flash of concern, followed by panic, that gives way to his sensible, practical mode. As I sat down he asked what was happening, I told him that laughing had dislocated my bottom ribs laughing. A silent micro conversation happened between us, his eyes asked if I was ok, my own said I wasn’t ok, but it wasn’t serious enough to leave and I was determined to stay. I took as deep a breath as I could and tried to join in with our friends conversation, while holding, squeezing, my husband’s hand and leg, but I just couldn’t concentrate on what was being said. Just before the lights went down for the final part of the show, he asked if I was good to stay, I said I was, and he told me that he can always tell my pain level by my eyes, but that they are beautiful when I’m in pain. Somehow he made it all more bearable in that moment. I made it to the end of the show and we left for home as quickly as my body could carry me. Luckily, my husband saw the mask slip, but our friends didn’t notice until I said something as we were saying our goodbyes.
Sleep wasn’t easy, I woke up every time I moved and had to take more painkillers during the night, but it definitely felt better this morning. Today I’m very stiff and in pain. I was expecting to be home alone today, but I woke up to find my husband working from home again. He had stayed to be sure that I was ok and that he was here if I needed him or if it happened again. I am very blessed to have such an understanding partner, I really don’t know what I would do without him. 
So, that’s how I’ve found out that laughing is enough to make my ribs dislocate. Something I had never even thought would cause a problem before. It’s certainly a testament to how good the comedians were, especially Jason Cook!

Disposition

  • ​Disposition; A disposition is an artificial habit, a preparation, a state of readiness, or a tendency to act in a specified way that may be learned.

My personal life is very limited. It has to be to keep my life worth living. It has been like this for 10 years.

I live in chronic pain.
Due to chronic fatigue, mixed with pain, I function at around 30% capacity compared to a person that is not sick. 

The illnesses I have are not life threatening, as such, but they are life limiting. The effect that limitation has on my mental health meant that changing my lifestyle and altering my life expectations is necessary to preserve my sanity, and therefore, my life. 

The pain is caused by Ehlers-danlos syndrome, hypermobility type. 

EDS is a genetic condition that affects the connective tissue. The collagen in my body is defective, making my soft tissue weak. My ligaments, tendons and muscles pull and tear easily and are too weak to hold my bones where they are supposed to be. My joints dislocate and partially dislocate, called subluxation, on a daily basis. It affects every joint, from my fingers to my shoulders and my hips. I often have to use walking sticks, and I regularly have to strap up my joints to support them and try to stop them from moving. My medicine drawer is more like a chest and I am the queen of injury first aid. My freezer has more ice packs than food in it some days. I can dislocate my wrist opening a pop bottle, my shoulders regularly dislocate in my sleep and sitting slightly weirdly dislocates my hips. I fell down the stairs at home a few months ago. I dislocated my right hip, knee and wrist and my left shoulder. I popped them all back in while I was crumples on the floor at the bottom before shouting for help from my husband. 

10 years ago I was diagnosed with Myalgic Encephalomyelitis. M.E (also called CFS, chronic fatigue syndrome). 
Fatigue is not just being tired. Most people only experience a few days of real fatigue in their lifetime. It’s that bone crushing feeling you get when you’re laying in bed with the flu and you simply cannot make your body move to get out of bed, no matter how hard you try. It’s that first hour after finishing a hard training session, or a long run, where you just have to sit down to recuperate. It’s that last part of the evening after a particularly horrible day where you have to fall into bed before you fall into the sleep of the dead right where you stand. 


Now, imagine feeling like that for every hour of every day for 10 years. Sleep doesn’t make you feel better, it often makes you feel worse. Just a visit to the doctors or a visit to a friend is enough to put you in bed for days at a time. Catching a cold, or a virus, can keep you in bed for weeks as your body tries to recover. People that are the worst affected never manage to leave their bed, they have to be tube fed. 
I count my stars that I am lucky enough to be able to leave the house once a week, to be able to see friends and enjoy special occasions if I prepare myself carefully. That means spending 2+ days on full rest, essentially doing nothing but the bare minimum, before going out and spending 2+ days doing the same afterwards. Years of pacing and managing my fatigue has taught me to listen very carefully to my body. I don’t push myself to do too much, as soon as I feel the fatigue start to creep in I know I have to stop and rest. No waiting, no mind over matter, no pushing through the pain. I stop. Assess my body and make a decision. I either rest for a while and finish what I had planned, or I go home and set up camp on the sofa or in bed. All I can do then is wait for my body to recover. Then the whole cycle starts again.
That cycle is thrown completely out of whack if I have a severe dislocation. To explain, I class a non-severe dislocation as one that I notice straight away and manage to put back into place very quickly. They hurt like hell, but the pain reduces once it’s in place and the soft tissue damage is minimal. Rest, ice and painkillers sort it out. A severe dislocation is very different. It may be hard to put back into place, it may take a lot of time to relocate. It causes severe damage to the soft tissue. Sprains, tears and deep bruising are common. The pain is horrendous. Pain killers barely touch it. These types of dislocations land me in A&E if I can’t relocate them, or with a GP visit if the pain doesn’t lessen within 24 hours. These are the ones that have me laying in bed at night, crying into my pillow trying not to wake up my husband. They cause extreme fatigue all on their own. 
Pain causes fatigue. My body trying to heal itself causes fatigue. 
Fatigue means my body is fragile, I get wobbly, I get migraines, I have POTS (postural orthostatic tachycardia syndrome) that makes me dizzy, makes my heart race and makes me faint. All of this means I’m accident prone. Every knock, fall or slip causes a dislocation. Dislocations mean soft tissue damage, damage means pain. Pain causes fatigue… 
It’s a never ending cycle. I can’t break it, I can’t change it, I can’t cure it. I can manage it, I can listen to my body and give it rest and TLC when it needs it. I can adjust my routines so that I live around, above and below my pain and fatigue. I can make my life the very best I can. I can take pleasure in the small things. I have the time to watch the weather change.
Disposition; A disposition is an artificial habit, a preparation, a state of readiness, or a tendency to act in a specified way that may be learned.

Tool – Disposition

The first one…

For my first blog I thought I would talk about me. Give you an idea of who I am and why I’m here, talking to what will hopefully become more than an echo chamber.

I’m Loula Cherry. Obviously that’s not my real name, but it is the name that most people know me by. Loula was a nickname a friend gave to me a very long time ago. Cherry, it’s got the same first letter as my real maiden name and I really like anything that’s cherry flavour. Plus I have cherries tattooed on the backs of my thighs, they are the top of my tattooed stocking seams. So, when I started using it, it seemed to fit well. Every other vintage and burlesque type model had a pseudonym, so I had one too.

I was a pretty successful model. I went from vintage, burlesque and rockabilly style clothed and lingerie modelling to topless and artistic nude within the first few years. Maintaining my rockabilly, grunge and more recent gothabilly style. I quickly slipped into the world of mainstream topless modelling, even though I’m a size 16 and I’m pretty heavily tattooed.

At the same time I became involved in the London Burlesque scene. I have a background in music management, well, it was a hobby really, on top of my old day job. So I utilised the skills and knowledge I had to stage manage shows, run the front of house and help to organise just about everything you can think of behind the scenes. I also put a few successful shows on myself. I got to meet some great people, make some amazing friends and help my best friend create a mini empire.

That day job I mentioned, before the modelling and the burlesque, I was a scientist! You can’t really get more different. I worked in a university, involved in everything from teaching to research, within a health and human sciences department. Essentially biomedical sciences.

I had to leave the job over 10 years ago when my illness meant I couldn’t continue. I spent the first year bedbound. I went from running at 100% capacity, to under 10% almost overnight. It took a long time and a lot of hard work to build up, but on a good day with lots of preparation I can hit 50% for a special occasion now. My baseline is around 30%.

3 years ago I met the man that recently became my husband. He’s pretty special, so special that 2 years ago I moved 300 miles north, leaving modelling and events behind, to live with him. We got married at the end of 2016. He’s my rock. He gave me a reason, and the support, to step up my fight with my illness and last year I finally started to get answers. After being written off my my doctors I was finally diagnosed with Ehlers-danlos syndrome, hypermobility type. It explains everything, going right back to when I was a baby.

In over 10 years I’ve gone from being a career minded scientist, to bedbound, to successful model and events manager to housewife. It’s a lot to get used to!