Chronic fatigue is....

Hi.

So, what's it like, having a perma soul-sucker like Chronic Fatigue Syndrome? Sometimes it's worse than others.

But what does it MEAN though?

• It's waking up hoping it's early am instead of early pm so I can sleep some more.
• It's being caught in my dressing gown with bed head so much my postman barely recognises me dressed.
• It's cherry tomatoes instead of big ones so I don't have to slice anything.
• It's staring at my yoga mat and thinking 'If only'.
• It's remembering the days when I did a full day's work, the housework and then MADE FOOD. Shepherd's Pie! Apple crumble! I do not recognise this woman any more. 
• It's constant infections - throat, chest, UTIs, styes - all little things which bring you down.
• It's not having showers on some days because I'm too tired to get in and out of the bath safely. (When I'm really tired I lose all coordination).
• It's doing hair washes and showers on different days sometimes so I can pace myself.
• It's knowing I need to eat healthy but not having the spoons to prepare healthy food.
• It's not cooking so I don't have to wash up.
• It's buying prepared salads at 4x the cost I could make them myself because I don't have the energy.
• It's eating crap I shouldn't but if I don't eat crap right now I'll barely eat at all.
• It's looking at my juicer KNOWING it'll make me feel better but not being able to face the preparation first or the cleaning afterwards.

But there are plus sides too.

• It's actually being able to spend all of Christmas and other such times with my family after 20 years of not doing so working in retail/doing airport work.
• It's appreciating the little things - a heartfelt hug when my husband comes home from work, a sunset, the seagulls hollering outside the window. 
• It's empathising with other people who are going through crap, who often look fine and are being misunderstood too.
• It's being able to be alone for most of the day, which I really need to enable me to cope with life. 
• It's being indoors much of the time so I miss the worst of the weather, so less wrinkles for me, hehe.
• It was a wake up call. If I'd carried on working and playing the way I was before Fibromyalgia & CFS came along, I doubt I would've seen 40.
• It's a chance to slow down and realise what really matters - friends, family, James.
• It's been a chance to really get to know myself, and know I'm NOT a quitter. I always used to think I was a quitter. I don't know why, because I've endured some pretty heinous crap over the years. Maybe I just needed to learn to stop beating myself up 24/7.
• I learned about the healing being in nature and with animals brings me. 

If you have chronic illness, share a couple of the pluses and negatives in the comments (if you have the spoons).

Thanks for reading,
Leah xoxo

30 day challenge day 8

Hiya loves!

Where do you see yourself in 5 years time?

Alive, hopefully, and with a good quality of life, but other than that who knows?

One thing chronic illness teaches you is to live in the moment, which is what I try to do every day. Sometimes I feel human when I wake up, and sometimes I don't, so that dictates my life. Being present is good though. I try to go into every day with no expectations, just let go. Good things happen when you do. I believe in that.

Thanks for reading.

30 day challenge day 7

Howdy!

What was the biggest realisation you have had?

Support is everything. If you haven't got it, it's very bleak indeed. Thinking back to times past can be an incredibly painful thing to do, such as this occasion.

When you're ill, you don't understand what's happening to you, but somehow you have to dig deep within yourself to find the words to describe this alien thing happening to you to your spouse/partner, family, friends and most importantly of all if you're to get any help, your doctor. It's the worst possible time for you to have to advocate for yourself, but you have to, even though it's not going to be easy. It can be exhausting.

I lived with my partner (now hubby, of course) not 'getting' it for a long time. He is the kind of person who doesn't believe anything unless he sees it with his own eyes, and even then he tries to rationalise things. It might be because he's in IT and he has to see a problem to fix it, but me telling him things were really bad didn't work. It might be because he has a scientific mind, or because he's an annoying eternal optimist or even that he was in denial, but even him seeing things were really bad didn't work so well either. I remember the days before we had the car and having to lug the shopping home from the supermarket on foot. Carrying home heavy bags made me really suffer. We lived up a huge hill at the time which was accessed from the local supermarket by about 50 very steep steps. At the top of the steps we had to carry on up a steep hill. We also lived on the top floor flat of a house. By the time we got to the main front door of the house our flat was in, I would be sweating heavily, almost in tears of pain and fatigue and feeling like I couldn't walk another step, but James didn't get it. He'd take his part of the shopping up the 3 flight of stairs to our flat and leave me to find the energy to get myself and the rest of the shopping up the stairs. It could take anything up to 15 minutes for me to get up those 39 steps as I was done. I can't tell you how many times we repeated this same scenario and it didn't seem to sink in for him. Gradually he started to carry more of the heavy stuff, or came back down for my bags as well once he'd got his upstairs, but for a long time I was pissing into the wind. I would always tell him things were too much but he'd always ignore me and say things would be fine. There's a point where unfettered optimism turns into having your head up your arse and I'm afraid he strayed into that territory and stayed there for a while.

Things like travelling took it out of me hugely. Carrying heavy things onto trains, tubes and coaches is hard work with chronic illnesses. I remember a few years ago now when we went to Wales for the weekend (before we had the car.) We had a 90 minute train trip into London, a journey on the Tube, a walk to Victoria coach station followed by 9 hour coach trip, then an active weekend. When we were in London on the way back, we were walking to the train station from the Tube up a big flight of stairs. I was carrying a heavy backpack and I fell up the stairs because my tired brain stopped being able to move my legs in the right way (this has happened several times.) I really hurt myself, cutting and bruising my shins and bruising my arms when I landed. I remember standing in the busy station concourse sobbing my heart out in pain, exhaustion and frustration, inwardly begging James to finally grasp the notion that I AM NOT WELL ANY MORE. I ended up vocalising that as well, as a minute previously he'd wanted me to run for the train. Hello?! I had tried to tell him something like this would happen and as usual he had pooh-poohed me out of optimism. I think seeing me so bashed up was probably the first time he understood.

The honest truth is I had to hurt myself time and time again before he totally accepted/understood things had changed. Now he's brilliant and is constantly looking out for me and warning me of hazards when we're out. I do get angry when I remember how hard things were before when was pressuring me to get back into work, but I guess he was used to me being the girl who was as tough as old boots and as strong as an ox. Also, don't forget that when a person is ill they are getting some kind of help somewhere - from a doctor, a friend, or a family member, but often partners are left out in the cold somewhat. I don't think he wanted to admit anything was up as where did that leave him?!

I am so glad that I have James's support now, because for a while I didn't think we could stay together if he didn't believe me. It sucks, but it's imperative you get your loved ones to understand somehow. Even if like in my case if that was showing my injuries time and time again. Now James knows when I say I'm tired, it means I'm just about fit to pass out (which I have done a couple of times.) If I say I've done enough, it means I can feel I'm getting to the point where my legs will no longer work as they should and I'm about to have an accident. If I say no I can't do something, he knows I mean it. I know my body better than he does, after all. Thank God he can see that now.

It's a good job I love him, isn't it? ;)

Thanks for reading!

30 day illness challenge day 6

Hiya!

If you could have told yourself when you first remember these symptoms arising, what would you have said?

Well.... not being psychic I couldn't have told myself it will all be OK, because at the time I didn't know that. I couldn't have told myself one day I will have a name to call the beast and the uncertainty would be over, because I didn't have a crystal ball. I couldn't tell myself that at some points I would feel almost suicidal and as if I was going insane, or that the uncertainty was worse than the illnesses. I didn't have much to say to myself at all, other than I knew something was terribly wrong and virtually no one believed me.

What I did have was someone who told me my symptoms sounded a lot like hers, that it was a rough road and she would be there for me. Now I try to do the same for anyone else who asks for my help, because I remember all too well how shitty it feels.

Sorry this is a bit dark! Thankfully things are a lot better now.

Thanks for reading.

30 day illness challenge day 5

Hiya!

How does being chronically ill make you feel?

I came across this question (but worded differently) accidentally during CBT and the answer is WEAK. It took me a long time to be able to describe it in one word.

Before I felt strong, invincible even, and now I feel weak. My body is certainly weaker than it was. It's hard for me to feel empowered or powerful when I struggle to open a bottle of water. ;) I think one of the reasons I get panic attacks sometimes when I'm out is because I don't feel able to defend myself any more. Prior to being ill I was always out on my own wearing my 'shit-kicking' New Rock boots, which are a weapon in themselves. I knew if some random guy decided to prey on lil' ol' me out on my own at stupid o'clock then I'd kick him in his baby makers and run like hell. Now? Well, it's likely I'd lift a leg off the floor and fall on my arse because my balance is so crap. Hahaha.

I guess the crux of it is I never wanted to be the type of woman most men want. I didn't want to be weak, vulnerable, in need of help. I wanted to blaze my own trail, and being physically strong felt good. Perhaps I can try to make up for my lack of physical strength with mental fortitude?!

Thanks for listening to me ramble!

30 day illness challenge day 4

Hiya!

How have your friends and family reacted to it (your illness)?

My family have been great. My mum has been ill most of her life with asthma and recurrrent hernias so she knows what it's like to feel like battered crap all the time. My dad - bless him - when I told him what was up, he said 'Will be you be all right though?' Awww. My brother has been great, his girlfriend was fantastic, so accepting right from the off. Everyone has been fantastic. I have an amazing family. If anyone has said anything 'off' about it, it hasn't got back to me.

Most of my friends have been great, and the ones who weren't? They're not my friends any more. When I first got ill I was quite depressed and deleted about 50 ex-workmates from Facebook as constantly having to turn down invitations to go out then having to explain why got tiring. (Side note - why can't some people just take no for an answer?) Some people I used to hang around with and may have called friends once have ended up being acquaintances, but there are so many good people in my life I'm OK with it. But overall I've been really, really lucky.

I wish the same for all people with long term illnesses.

Thanks for reading.

30 day illness challenge day 3

Hello you!

Day 3

How did you get a diagnosis?

Weeeell.

I went to the doctors for the first time in 2008 when the physical pain symptoms really started (which was on my birthday in Brighton as I said in my last blog.) My doc at the time immediately thought I had Sarcoidosis due to the symptoms I presented with at that time. I latched onto the diagnosis like it was a life raft and went with it, but multitudes of tests at the hospital could not confirm it. My blood tests showed there was inflammation in my blood, but they couldn't find any evidence of it in my body. As the treatment for Sarcoidosis is steroids, which can be more dangerous than the condition itself, they couldn't start treatment on a whim. Eventually the tests all fizzled out and the doctor lost interest once he couldn't be the hero and fix me. Back to the unknown.

When I got pregnant in late 2010 I had a temporary abatement of symptoms. After I lost the baby in 2011, everything came rushing back at once which made me realise how much shit I'd been putting up with. I went to see a different doctor, and by now I'd taken the advice of lots of people on various illness forums I was on to start listing my symptoms as they occurred. Only at this point did I start to see results.

I was sent back to several specialists at the local hospital, and eventually saw a kindly fella with more half a brain in his head who suspected I had Fibromyalgia and CFS. Early in 2012 I was sent to see a rheumatologist to confirm this, and although he was a total prick who got off on hurting me over and over again and asked how many burgers I eat a week (O RLY? Yes he did!) he confirmed the diagnosis.

So from start to finish it took 4 years of seeing doctors on and off and 5 years of symptoms before I had confirmations of the names to call these beasts.

Thanks for reading.

30 day illness challenge day 2

Hi lovelies!

Day 2

How have these illnesses affected your life?

Well, chronologically I got asthma first. It meant I had a lot of chest infections (still do) but it only affects me badly then. Then in the late 90s/early 2000s I had a period of ill health, until I was diagnosed with an underactive thyroid gland. It was a really difficult time as I was under a lot of stress at work at the time (which I think ultimately led to me developing the condition) and I was beyond exhausted. I'd walk 2 minutes to get the bus to work, sit on the bus for half an hour, and by the time I'd got into work I had to lay down on the floor in the back and cry as I was so exhausted. It was horrible. I thought I was going insane and when a doctor finally took me seriously I skipped home from the doctors surgery. When I started treatment I soon started to feel better and went back to being a bit of a party animal again. I did calm down a tiny bit when I met James in 2003, but I was still burning the candle at both ends.

Then in 2007, again working at a very stressful job (do you see the pattern yet?!) I started to feel exhausted again like I did before I got the hypothyroidism diagnosis. Then other things started happening - constant dizzy spells, migraines, and mental confusion. I carried on at work for another 6 months, all the while deteriorating swiftly, until things had got so bad that I walked out of my job one day and never went back. I started to look for work and soon realised things weren't going to get better with a bit of rest. I went to Brighton on my birthday in April 2008 with James and some ex-work colleagues and out of the blue I couldn't lift my legs off the floor so much as a few millimetres without being in enormous pain. This 'weekend of fun' we had planned involved me dragging hundreds of yards behind everyone else all weekend crying in pain.

A couple of months after I quit work I decided to keep myself occupied/disciplined by doing voluntary work, but had to stop as I was suffering so much. I had roughly about 6 months of rest, then I got a part time job (15 hours a week) which I did for almost a year, and that took such a toll on me I was constantly injured, so once again I had to stop working. That was about 3 years ago.

So how has it affected me? Before I worked too hard, played hard and didn't look after myself at all. I had a busy social life and was hardly ever off a train because I was always going to visit friends & family or going to gigs. I never stayed still. I had no concept of relaxation, let alone striving to do it more! For the decade I lived near Gatwick I took advantage of the good rail links and went into London 2 or 3 times a week, visited my friends in Manchester often, and went to loads of gigs and festivals. I was incredibly independent and put myself at great risk by travelling on my own late at night, but I thought I was invincible. I'd had a hard upbringing in a hard town which culminated in living a hard life and I was a tough little bastard. I often went to work on a couple of hour's sleep, if that. I walked everywhere I could, was worked with men in many of my jobs and was no 'weedy' woman in comparison - I held my own. I thought I was Superwoman.

Now I don't work, I'm in pain a lot, and I stopped counting my symptoms when they got to 3 A4 sides in bullet points. That was a few years ago now and new symptoms come up all the time. Every day is different - I never know what each day will bring me. I'm not very mobile these days - even if I did feel like I might be able to do a lot of exercise one day, if I do it'll come back to bite me in the arse the next day, or for several days. The hardest thing for a chronically ill person to deal with is the constant need to weigh tasks up against the cost we know we'll pay. It took me about 3 years to work this out. 3 years of trying to prove to myself I'm still strong and that I can do normal people things like take a long walk or carry some heavy shopping home. 3 long years of boom and bust, of overdoing it then spending teary days and weeks on the sofa recovering. For a few of those years James didn't get it. It took him to see me fall LITERALLY a few times before he got it. How is it a person's legs can just stop working when they're going up stairs or putting one foot in front of the other, the scientist in him might have wondered? He sees everything in black and white; demands a reason for everything. Once he stopped thinking so clinically and started counting the bruises, wiping away the tears, eventually he got it. Now he's as gentle on me as I am.

So much of illness is loss - loss of self, loss of self esteem, loss of good health, loss of employment, loss of earnings, loss of your future as you'd planned it. I try to focus on what it's given me - the chance to slow down, the chance to take better care of myself, the chance to eat better, the chance to appreciate all the people who stayed with me throughout it all, the chance to be thankful for my husband who is such a good man. 

Had I not developed Fibromyalgia and CFS I probably would've died young of a heart attack or something equally as horrid. Obviously you never know, but I feel like I've dodged a bullet. Although I hate being a burden on James and hate not being able to support my parents in their old age (I always had this romantic notion that I'd be able to make their lives easier by helping them out financially as they got older) I do feel like it's given me the time to look after myself. I was far, far too hard on myself before and I've decided I want CBT to focus on learning how to think of myself more kindly. I've always treated myself so cruelly. I'd never expect anybody else to put themselves through some of the crap I've put myself through, both in good health and poor health. I've always had far higher standards for myself than I'd expect anyone else to have, and I don't know why.

Now I've got my diagnosis I can start getting over the shock and anger of it all and start learning lessons.

Thanks for reading.

30 day chronic illness challenge

Hiya pickles!

I've decided to do this.

Although my health is a big part of my life, it's quite a niche topic for my blog so I'm going to post each daily update in the early hours so those who want to read these posts can seek them out and the rest of you can avoid them. ;) I'm going to keep the posts brief when I can, as I've spoken about my health quite often before.

While I'm here I'll do day 1.

Introduce yourself. What illnesses do you have? How long have you had them?

Hi-iii! I'm Leah (as most of you will have guessed!) I have Fibromyalgia and Chronic Fatigue Syndrome, Asthma, hypothyroidism and a few side complaints from Fibromyalgia like IBS and chronic bladder pain. I started to get Fibromyalgia and CFS symptoms in 2007 and was diagnosed in 2012.

Thanks for reading.

How normal do I have to pretend to be today?

Hiya loves.

I just wanted to put some words down about my health (again!)

I got up this morning after 13 hours in bed feeling like I'd been hit by a bus. The combination of Fibromyalgia and CFS mean that even a huge amount of sleep isn't refreshing. I was only awake for 7 hours yesterday then had to go back to bed because I was exhausted. It used to be very rare that I would feel sleepy, rather than just weak, but feeling I can barely keep my eyes open and have to get to bed NOW is happening more and more lately, I can only assume because of the worry of my benefits appeal.

I got up, went to the fridge for some cold water as I was parched and said to myself 'How normal do I have to pretend to be today?' The question took me by surprise because it's so true, and then I thought 'What commitments do I have today? Can I be myself or do I have to put a front on?'

I was trying to think what today brings me as I stared without looking at the contents of the fridge until I remembered what I was there for - water. As I closed the fridge door I saw the form on the door and remembered I have a half hour long phone interview at 2pm to talk about how CBT can best help me.

I don't know what's worse - having to pretend I'm OK or having to talk at length about how things really are. Both are extremely draining.

It's got to the point where I crave my own company. After hubby goes to bed I enjoy the silence. I enjoy not having to answer his questions and not having to be present to fill him in on all the bits of tv he's missed. He plays pc games all night, but expects me to be 100% focussed on whatever's on tv so I can fill him in with the bits he missed when he was off killing monsters. It's an intrusion I could do without, but thankfully we have Sky+ so I can rewind so he can see what he missed. How present am I in anything? Not very. I withdraw into myself more and more and shut off my ears so I don't get overwhelmed. I love science and wildlife shows and can just about concentrate on the more technical stuff (even Brian Cox, whose programmes I love) but combined with James's commentary over the top (he's a total science geek) I just shut off. He knows now to get any conversation out of me the tv needs to be off. It's lovely to be able to think and talk without struggling to remember what I said half a sentence ago.

Having to think for long periods of time physically drains me, as was proved when my mum and step dad came to stay a couple of weekends ago. My mum talks constantly (and I mean without end, unless she's eating, and not always then!) and by 9pm on both nights I was almost crying with fatigue from having to listen to her all day long. It feels like I'm under assault. I can see why my mum talks loads to me - my step-dad is deaf so she has no luck with him! I think she saves it all up for when she sees me :)

Being with one friend at a time I can cope with, so long as there are no distractions - no tv, no music, no laptop in front of me. When there are distractions I lose track of the conversation - both mine and theirs. Being with a lot of friends doesn't tend to happen so much now, but when it does it's an assault on my senses and at some point in the evening I'll have to take some time out to decompress, even if it's only 5 minutes in the loo to rest my brain.

Being outside, in town with a friend, or in the supermarket with my husband drains me. I try to show no signs of weakness or illness when I'm out, and that's a strain in itself, but it's primarily sensory overload which tires me. Loud noises, people moving past me, strong smells - they all add to the mix and make me feel like I want to scream.

It's horrible to admit but my favourite kind of day is where I have the least possible face to face interaction with other humans, no expectations of me and nothing planned. I only feel stress free when I can do things at my own pace without anyone else relying on me or hassling me. If you'd have known me at my bubbly best you'd have never thought I'd end up like this - a stranger to myself, let alone to my loved ones. I used to love being surrounded by people at work and play. I was at my best when bouncing off of lots of different personalities and used to always have a 'more the merrier' outlook on any social event, bringing together a couple of my different sets of friends to make things more fun. There's no point crying over spilt milk - things are what they are. I still enjoy people very much - just in less full on circumstances than my noisy pub-dwelling days of old. I'm probably best at online friendships - I find Twitter and Facebook much less stressful than real life - or a quiet afternoon in a Wetherspoons pub so I can hear myself think and hear people speak. 

Well, it's 45 minutes until this phone chat so I'd better brace myself for it. I'll let you know how it goes.

Thanks for reading.

Excellent resources to explain chronic pain

Hiya loves!

I swear this is the last time I'm going to talk about all things health for a while.

However, should any of you have a chronic pain condition or know someone who does, I have a couple of excellent sources of information for you.

This first one I saw on Facebook here.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

AUTHOR UNKNOWN. If anyone knows the author I would love to credit them.

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The second resource I found was from this Wiki How page on dealing with chronic pain. It has many great points.

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Both articles are invaluable for people like me who are struggling to convey the issues of the condition(s) they're dealing with. They are also great for people who want to educate themselves about the pain conditions their loved ones are dealing with. Let's not forget these illnesses don't just affect us, but everyone close to us.Education leads to understanding and support, and that is a wonderful thing!

OK, I promise to concentrate on all that's glittery and pretty for a while now.

Thanks for reading!

Me in a nutshell

How much of ourselves do we successfully put over on our blogs?

I'm quite rubbish at varying my blog posts enough to talk about the things I like, so I thought I'd do a 'my life in a nutshell' post.

I have Fibromyalgia and Chronic Fatigue Syndrome (M.E.) so it touches upon every area of my life. I'm not all 'woe is me' about it. As long as I draw breath I'm happy to be alive. The alternative is so final! I adapt to each obstacle as it comes, roll with the punches and when I have a good day, I'm like a pocket rocket :)

I love Sons of Anarchy. Kurt Sutter (writer) is a bloody genius. I never buy TV series, but I will collect all the DVDs from this series, as I will the next....

A Game of Thrones is another of my big loves. George R. R. Martin is a great writer and the second series is almost over already *sniff*. I have 4 of the books so far and will collect them all. I thought the fantasy genre would be a bit hard to read but they are awesome books and they suck you right in as a reader.

Make up and nail polish make my heart sing. I do my make up almost every day and I do my nails at least once a week. I buy a lot of beauty products. I mean to take photos of the products I buy, my make up and nails a LOT more than I do. In my opinion, make up and nail shots need a mixture of natural daylight and flash to capture the nuances, and if there's no decent daylight.... no photos. Thankfully my new camera (which should be here by Wednesday) has much higher ISO settings so I should be able to take better photos in poopy lighting conditions. Perfect for sunless English 'summertime', ha! I look forward to taking more beauty shots photos of absolutely errrrrrrrrthang.

Clothes, clothes, clothes, especially dresses. I love clothes but I'm really awful at asking J to take photos of my outfits so most shots are bodged, like the ones above. My new camera has a remote control available, which I think I will purchase if it's not megawads, because then I can make use of my tripod and take my own outfit shots. One of the things I'm most looking forward to on honeymoon is having J around to take pics of my outfits every day :) I really want to take more outfit pics, as dress up is always fun.

Photography is another one of my big loves. 'Proper' DSLR photography, Instagram snaps where at least the filter is given some consideration and hastily-taken camera phone shots - whatever the format, I love taking photos. I used to be semi-serious about it - getting involved in taking shots for local alternative models and events, and doing favours for friends on the way to building myself a portfolio, but as my illnesses got worse the time I was expending taking photos of people out and about and editing them afterwards began to eat into my 'well' time too much. It was all gratis too, so it's not like I had financial compensation to sweeten the pill ;) Now I prefer to photograph inanimate objects unless someone asks really nicely ;) That way I can suit my activities to my health on any given day.

My friends, family and hubby are everything to me. I can deal with whatever life throws at me with these bobby dazzlers behind me.

What would sum you up in a nutshell?