My journey into Fibromyalgia and ME

I don't talk about my chronic illness nearly enough - well, not enough to help other Spoonies out. I'm sure well people may think I bang on about Fibromyalgia and ME allll the time, but considering my health shapes everything, I should/could share a lot more.

A lot of the questions I've had over the years are about my earliest symptoms and how I got diagnosed. I'm going to talk about my initial symptoms, and I'll talk about my road to diagnosis in another post. I'm going to make all the symptoms bold so they're easy to pick out. 

It was 2007, summer leading into autumn, and at first it was little niggling things that built up week by week and gave no clue of what was to come. Recurrent headaches, dizzy spells on looking upward or turning over in bed, a sore throat all the time, motion sensitivity (a short car ride would make me feel very nauseous), being extra sensitive to strong smells, bright lights, loud noises etc. In September 2007 James and I went on holiday - we'd booked to stay in a caravan park 4 miles outside of Torquay so we could walk miles into town and back every day. I was already pretty fit, but was obsessed with being smaller back then, and wanted to do this walking holiday to shift some pounds. A couple of days into the holiday it became apparent that I couldn't walk like I had done before. I felt awful all the time, and cried with fatigue a couple of times as we walked into town as I really felt like I couldn't go on.  I thought I'd be all right after a few days if I took it easy. It got no better during the holiday, and I felt really frightened as I knew this wasn't me at all. I went back to work and things got worse and worse. I was exhausted all the time and would get home from work and crawl under the covers fully clothed and sob as I felt so helpless. I went from someone who worked 9 hour days on my feet, walked 25-30 miles a week, who had a busy social life and who would come home to cook and do housework, to a shadow of my former self. I didn't want to eat, all I wanted to do was sleep, but insomnia was my new pal. I felt absolutely wretched.

Then my brain started to be affected. I was an administrator in charge of large sums of money and I started to lose the ability to add up. I was confused all the time, where previously I'd multitasked like a mofo. A simple task took me 4 times as long as usual. I was under a huge amount of stress already as I'd been doing 2 people's job roles for 9 months, and then in November I was punched by a customer and got negligible support from my bosses. They didn't even bother to check the CCTV for 3 days to see who'd done it. In many ways this was the final straw, and just two months after the assault I'd walked out of my job, never to return. I didn't even recognise myself any more. All my sparkle had gone. I'd never walked out of a job in my life, let alone one with so much responsibility, but in my naivety I thought I just needed a couple of weeks of rest and I'd start job hunting again.

Except even rested I felt no better. By this time I'd developed IBS which went along with the daily headaches, dizzy spells, mental confusion, sensitivity to smells, light and noises, sore throat, and exhaustion.

Less than a year after my symptoms first began, in April it was my birthday and James and I went to Brighton for a day out with my ex colleagues. We had lunch, explored Brighton and in the evening saw Omid Djalili. Sounds great, right? Except it felt like my legs were being ripped off my body and I spent most of the day in tears trailing 100 yards behind everyone else. I couldn't really lift my legs up, but had to drag them along the floor slowly and very painfully. When we retired to our hotel room that night James had to lift my legs into bed for me as every tiny muscle movement made me cry out in pain. I woke up the next morning and had had a night sweat so great I'd saturated the bedding and mattress and was soaking wet. I went to the doctors the next day and to his credit he jumped to it and ordered up a bunch of blood tests and gave me a thorough physical examination. His first thought was Sarcoidosis as there were markers up in my blood which couldn't be explained, and a battery of hospital tests were undertaken. By this time I'd started having other problems like sore eyes, difficulty breathing, a nasty red rash on my shins, a red rash across my nose and cheeks, widespread pain (as well as the someone's-trying-to-rip-my-legs-out-of-my-hip-socket feeling) and more drenching sweats, even on minimal exertion. Depression and anxiety disorder soon followed as my ability to take part in my own life shrank by the day. I grew agorophobic as I was often limping with pain and felt terribly vulnerable outside the house on my own. Every day I felt like I had the symptoms of a cold. My balance was terrible.

By 2009 I was terribly allergic to hair dye (a friend had to rush me round antihistamines for hair dye allergy to halt anaphylaxis after doing an inner elbow sensitivity test as my throat was swelling shut) and my conditions affected everything from what clothes and shoes I could wear, which food and drink I could consume and which environments I could be in. Busy, noisy, bright places were hell. Falls were commonplace, and in 2010 alone I had 6 major injuries - 2 back injuries, an achilles heel injury and more. I also passed out a couple of times through sheer fatigue. The pain - so many different types of pain. Burning pains, stabbing pains, throbbing, long lancing pains, deep aches, cramps. Pain everywhere from head to foot, especially after exertion. A long walk would leave me exhausted for days. Adding stress to exertion would wipe me out for weeks. When we moved in 2008 I did the packing slowly over weeks and did barely any lifting at all on the day, but was wiped out on the sofa for 3 weeks afterwards barely able to feed or look after myself. By about 2009 I'd also developed bladder problems too - urge incontinence related to my menstrual cycle, extreme pain after eating/drinking certain things (possibly interstitial cystitis), dry skin everywhere, constant infections - styes, throat infections, chest infections, UTIs, conjunctivitis. There was no part of my body not affected, no task I might undertake not altered. My life as I knew it was over, and I was still undiagnosed and desperately needing a name to call the beasts that ailed me, but I had to wait 4 long years for that.

There are many more symptoms and I'm sure I've missed out many, as new ones come along all the time.

These are my experiences. Every person's experience with chronic illness is different. The trouble with chronic illnesses like Fibro, ME, types of arthritis, lupus, MS, Sarcoidosis etc etc is that MANY of the symptoms are shared by ALL of these conditions. It's often a long, exhausting, miserable process of elimination to be diagnosed, and that's without institutionalised bigotry as I experienced on my journey to diagnosis for existing in a fat body.

If you have any questions feel free to ask and I'll help however I can, but my advice is no substitute for a consultation with a doctor.

Thanks for reading,
L xoxo

I'll talk about my road to diagnosis in another post. 

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

Chronic illness and consistency

Hello pickles,

One of the most annoying things about chronic illness for me is the lack of consistency it brings to my life. I feel better in myself when I eat well and take gentle exercise, but there are vast periods of time when that just isn't possible.

Generic past 'healthy' meal photo for the purposes of having a photo in this blog entry.

It's ironic that when I need nutrients most of all, I'm least likely to be able to take care of myself. I've just come out of a couple of months where I haven't juiced anything at all, and have basically lived off of pre-packaged salads and other quick fixes. About a week ago, despite feeling like hell I decided I was going to start cooking again and make a concerted effort to cram in as much fruit and veg as possible, as well as drinking plenty of water.

I'm not looking for 'good fatty' approval, nor am I here to moralise about food choices. When I eat lots of fruit and veg I have more energy, I sleep better, my IBS is less problematic and I feel slightly better in myself.

As much as I'm tempted to all gung ho and promise myself this is the new me, I know at some point through choice or necessity I'm going to overdo it physically again (or have a mental health slump) and then I'll be thrown into months of not being able to take care of myself properly again. Last time my family stayed with us I took loads of exercise, and I felt bloody fantastic for a couple of days afterwards. And then the fatigue set in - not sleeping properly even though I'm exhausted, getting up and feeling the need to sit down as soon as I've cleaned my teeth as it has wiped me out. Going hungry as I don't have the energy to eat, and when I do having some pre-packaged shit or a sandwich. Not cooking anything beyond the occasional bacon sandwich for weeks on end, and feeling shit about it.

So what to do? What is there to do?! I can fight against it, making myself even more ill through stress, or I can try to accept there are times when it's too hard to take good care of myself. The thing is that when I feel so low and devoid of energy, it's beyond me to think about rustling up a quick omelette or beans on toast. EVERYTHING feels like too much effort. I simply can't brain looking after myself. The fatigue is all-encompassing, mentally and physically, and it's hard to explain to those who are well. I can best describe it as feeling as if you are under siege.

By far the most annoying thing for me about Fibromyalgia and CFS/ME is never feeling I can to do enough to make a difference. I can only take care of myself when things are going well, and that's not very often.

Gentle hugs to my fellow spoonies battling to do what's right for you but not having the spoons to do it.

Thanks for reading.
Leah xoxo

Outfit August Round Up//Catch up

Hiya lovelies!

I've been a bit quiet for a couple of days but I'm back with an Outfit August round up post and a general catch up. I did 16 OA outfits in total - not as many as I'd hoped.

Which one is your fave? I really like the monochrome chevrons, the galaxy dress, the animal peplum, the checkerboard skirt and the duster jacket. The only one I really didn't like is in the 3rd collage down, the black maxi with the leopard print hat. It needed more somehow.

So, what have I been up to? Recovering from Plus North, mainly. I've been taking ages to get to sleep at night and sleeping well into the afternoon, which sucks as the hours of daylight we're getting are diminishing by the day and if anything I need to programme myself to get up earlier, not later.

On Friday I went to the Yours Clothing store opening day in Ashford, which was really good but very tiring. I met Katt for the first time and got to see loads of beautiful new things, as well as have a good ol' natter with the other customers in the long queue to pay. (I think everyone who went into the store bought something - the tills were inundated!) I've never met such a friendly bunch of people in a shop queue before. It was brilliant! I'll have a post dedicated to that coming up within the next few days with loads of photos and all the goss. I also picked up a new dress, my bad, post wearing that to follow. Beans on toast for 2 weeks for me, eep. :)

You know I said I was going to talk a bit more about my health with regards to Fibromyalgia and CFS/ME? Here we go...

The travel to and from Ashford was very tiring and left me in a lot of pain. I was really anxious to the point of almost having a panic attack (public transport isn't my favourite thing!) and I didn't stop sweating copiously and shaking from nerves until after I got home. When I got back to my local train station I was so fatigued I had to lean on a lamp post for support until my cab came as I couldn't balance on my own. When I got indoors I was in so much pain I was nearly in tears. I got straight into bed and fell asleep once I'd got as comfortable as I was going to get. Trying to sleep when you're in lots of pain is no fun, as I'm sure you all have experienced at some time or another.

I woke up about 90 minutes later with such a sore throat I could barely talk and massive cramps in my legs and back. I felt - to be frank - like hammered shit. I knew I would end up feeling terrible but I still went because I can't be a hermit all the time. But every time I do something - no matter how insignificant it would seem to a 'normal' person - I have to pay the price afterwards. I'll be feeling the effects of that little outing for days.

All I did was travel on a train, walk for about 15 mins from the station to the shop, do some shopping, sit in a cafe with Katt for a natter and came home again. I was out of the house for about 7 hours in all, so it's not even as long as a normal working day for most people. This for me is what I call a 'big day out' as I know the effects will last for days after the event. Every action is weighed up carefully. Is doing xyz worth the pain it will cause me?

It's not just that. I can feel my mind slowing down when I'm out in public. It's like I'm thinking through the mental equivalent of quicksand. I can't remember a lot of what went on at Plus North, and when I'm having conversations with people I lose my thread half way through a sentence and end up looking like a dumb arse. I can feel the speed I talk at slowing down as I desperately try to remember what the hell I was saying 3 words beforehand. Loud noises, bright lights, people rushing past me in a public place....it's all too much for a Fibromyalgia and CFS/ME brain so it shuts down to cope. I can't talk and walk at the same time, or do anything else for that matter. It's like I used to be a super-computer able to hold loads of data and do loads of tasks at the same time and now I'm a floppy disk. Most of the time I don't load. ;)

I second guess myself all the time. Have I met this person before and forgot about it? Have I said hello to this person already at Plus North? Will they think I'm a effing idiot if I introduce myself again? It isolates me. I hate it, so sometimes I stay quiet when I really don't want to.

Honestly, I leave the house about once a week on a good week, and most of the time it's with James, in the car. Every time I'm out of the house, especially if there are a lot of people about, it's total war on my senses. It's exhausting mentally and physically. I crave quiet and love being out in the countryside with only birds to listen to. I'm on my own all day on the weekdays and still need to stay up on my own for a couple of hours after James goes to bed to decompress from a few hours of talking to him.

Sometimes I need to do things to remind me how bad things are, because believe it or not I'm an optimist and I keep thinking I'm better off than I am, and then I beat myself up constantly for alllll the bad days I've been having lately. Sometimes I need to be reminded of my limitations. So, there's a silver lining in every cloud (or, as I nearly just typed there's a silver cloud in every lining. Ha!)

Wow, I feel better for getting that out. :D 

Thanks for reading!
Leah xoxo

Fibromyalgia life hacks

Hiya!

I've had Fibromyalgia now for 6 and a half long years, and in that time I've learned a few things about how to make life slightly better. I wanted to share this experience in case it helps anyone else.

The weather

Seems a funny one to start off with, yes? No. Fibro people are incredibly sensitive to the weather. If I get too cold I get a chill which can last days. If I get too hot I very easily fall prey to sunstroke. If it's too windy (even on a hot day) my dry Fibro skin can chap painfully. What's the answer? Be smart. On a really hot day wear cool loose clothing which covers almost all of your body, preferably light in colour and made of cotton or linen. Think about people in really hot countries - they don't expose vast areas of flesh so they don't cook in the sun, they wear loose fabrics so the air can circulate and they often wear light colours - beige or white.

On cold days wear layers so if you get too hot you can take one off. It doesn't mean you have to carry huge woolly jumpers about with you - I  always carry at least one large pashmina in my handbag, sometimes two, so if necessary I can wrap them around my head/neck/shoulders. Carrying a compact umbrella at all times is a good idea, because getting wet and cold makes my bones burn for days. You'll learn over time what kind of weather affects you and dress accordingly, but if in doubt layer as you can always take something off.

Footwear

Now you have Fibromyalgia you might feel like you've been on one of those vibrating fitness plates for a month. You might notice your joints feel tender, like every step you take shock waves through your body. You need to wear appropriate shoes. When I was first diagnosed I lived in Vans trainers, until I got Achilles bursitis and spent months in pain before an even more painful cortisone injection finally sorted it out. Now Dr Martens dolly shoes or boots with rubber soles are my friends - the soles are just the cushioning I need between my feet and the ground. I need to minimise the time I spend walking on concrete. Where possible I walk in woods, as the spongy earth is much less aggressive on my joints. I might be able to walk for only a couple of minutes on the street without pain some days, and maybe 10 times that on soft earth. It might be a dent to the ego to give up sexy shoes for nanna shoes, but if it stops your achilles heels from feeling like they're about to snap, or stops cramp it'll be worth it.

Clothes

Since I've been ill I've subconsciously changed the way I dress. I don't wear trousers with zips or buttons except on very rare occasions as my dodgy bladder means I need to get my trousers off quickly or I will pee all over them. Often I'll start pulling them down as soon as I get off the sofa as the urge to pee is so strong. I live in leggings and prefer dresses I can just pull on and off over my head, again avoiding anything fussy like buttons or poppers as my hands are weak and often numb for an hour or so when I wake up. My clothes have to be soft above all, as my skin is so dry and fragile that rough clothes can make me bleed. I get a huge amount of pain from putting on and taking off my bra so sometimes I wear one of those stretchy pull on bras. They don't give a lot of support but it stops me feeling like my arms are being ripped off by angry Silverback gorillas. You'll learn which bits of your body need adjustments and dress accordingly. At first it might feel like you're turning into an old person, but who cares if you're more comfortable?

Rest

This might seem like a no-brainer, but I spent the first 2-3 years of my illness trying to prove I was still Superwoman - with horrible effects. I passed out twice through sheer exhaustion (once in the house and once in the street.) I worked so hard despite signs I was falling apart that one day I didn't even have the energy to lift my arms in the shower to wash my hair. I spent weeks confined to the sofa and bed after trying to do normal things like carry shopping home, go on 4 mile walks, have big days out to London, etc. I had more falls than I can count. I cut myself, burned myself, scalded myself, put my back out, had bruises almost as big as my head. You have to listen to your body. All the things you think are your responsibility? Some of those things have to be delegated or binned altogether. This brings me onto..

Stress

You have to minimise stress. Ideally you need a supportive partner (who may have to bear the brunt of working if you're too ill to) who will understand that you didn't choose the illness, you don't want to be ill, but you are. Fighting against chronic illness makes it worse. Believe me, I've been there. The only reason I'm not in tears of pain every day is because I've said 'Sod it!' to so many things. Having to give up work was hard. Giving up most of my hobbies was hard. Saying goodbye to a whole bunch of people who couldn't understand or couldn't deal with the new me was hard, but without all those things my life is better. If you have people in your life who don't believe you or don't support you, where possible you need to cut them out of your life. You NEED support. You need to be believed. No one chooses to go through hard times, but when they come there's no point in asking 'Why me?' It's how you deal with things that matters. In many ways chronic illness makes you selfish. You have to be to survive. You have to make YOU number 1, and after doing exactly the polar opposite all my life I now have to.

Better nutrition and exercise

You may find you've developed problems like IBS or an irritable bladder with Fibromyalgia. I've had to cut out alcohol except vodka and Crabbies, because everything else makes my irritable bladder agony. I minimise my caffeine intake as too much gives me panic attacks. My body needs more expensive, better quality food now. I used to live off any old junk but now my body tells me it is a temple and I feed it accordingly - low sugar, low meat consumption, high fruit and veg consumption, lots of water, no white carbs. Gentle exercise is important in Fibromyalgia. For me swimming is no good as I have CFS/ME too and it makes me so tired I become a danger to myself - I walk and talk like a drunk and am prone to falls and other accidents after swimming as it's too intensive, and I think the heat makes it worse too.

For me yoga has been the best thing. I do about 20 minutes 3 times a week when I can, but anything you do that's gentle will help stop your muscles seizing. When I do yoga I have more energy in the day and sleep better at night, as well as having less pain. You have to find your 'sweet spot' through trial and error - you need to walk the fine line between not being so tired that you are worse off, but you do enough that you feel better. I would suggest starting with as little as 5 minutes a day, every other day. Even gentle stretching is good - anything to loosen up those muscles. You will learn to exercise the smart way for you. We tend to drive to somewhere flat so I can walk without the pain of the steep hills we have locally. I can walk further on the flat and don't get terrible cramps and burning in my back and legs that hill walking gives me.

Drugs

As Fibromyalgia is a series of complaints there's no 'fix', you can only treat the symptoms. I'm on anti depressants, a muscle relaxant, migraine tablets and pain signal blockers. There are more 'whole body' type treatments you can try like massage or acupuncture, but you may not be able to get them on the NHS. Every time you get a 'big' new symptom, go to your GP - don't just put everything down to Fibro.

A good bed

I can't tell you the importance of having a good bed and a good mattress. If you're anything like me you'll spend a lot more time in bed once you're ill. It's of paramount importance you lie in comfort as a good night's sleep with Fibromyalgia is often as elusive as unicorn poop. If you're not actually asleep, you need to be resting in comfort. I spend about 12 hours a day in bed - trying to sleep and being asleep consumes half my days. I still get up feeling shattered.

Short cuts

Don't be afraid to use things to make life easier for you - electric toothbrushes, electric can openers, can grippers, etc. There's a whole lot of sensible advice about things you can do to make life easier for you here on the arthritis UK website.

Other Spoonies - not necessarily Fibro sufferers - what are your chronic illness life hacks? Feel free to share in the comments.

Thanks for reading.

What it feels like to be chronically ill

Hello loves,

I want to talk about how debilitating illnesses weigh a person down. I'm writing this for other people in the same situation as me, and I hope to make them feel less alone. No need for pity - just talking about this is helping me process things. My experience is my own and it might be different for others, but this is what it feels like for me.

Firstly, sleep is never guaranteed with Fibromyalgia and CFS/ME or many other chronic illnesses. I have no clue how I'm going to feel when I wake up, or what time I'll wake up. Sometimes I'll be asleep on the sofa by 8pm and other times I'll be laying awake until 7am with bug eyes and a massive headache. When I don't get to sleep until the time when most people are getting up, I hate sleeping through the day. I miss out on precious daylight and try to rush around getting things done so my husband comes home to tea in the oven, a reasonably tidy flat and a fairly presentable wife. It doesn't always happen. I'm always feeling guilty for not doing enough for my husband, and he already asks for so little. Maybe that makes it worse. It's one thing to aim high and fail, but aiming low and still missing is something else.

I'm never short of ideas for anything - blog posts, plans, etc but having the energy to carry forward these plans is another thing. I have dozens of notebooks filled with pages of ideas, ideas I'll probably never get around to covering. I lay in bed every night planning to do yoga and eat great the next day but I feel like hammered crap when I wake up and gradually come alive through the night. Having the energy to take care of myself properly is often too much to ask. I don't usually eat until about 6pm, and instead of a nice home cooked meal, often I'll have a fishfinger sandwich or a ready made pasta on a big bed of salad. I look at photos of myself from a year ago and see much less definition in my waist and wonder if I'm exercising less or eating more, or is this middle aged spread? It feels too hard to stop these changes happening in my body. Do I try to fight it, try to stop these changes in their tracks? Is there anything I can do? Do I have the fight and energy to undo the changes ill health is making to my body or do I accept a slow slide into the invisibility of middle age?

Being chronically ill ain't pretty. It's crusty eyes, bed sheets and pillows thrown all over the room from a tempestuous sleep, lines all over my face from being tangled up in the bedding, hair in a bird's nest from the night sweats and waking up in need of hosing down by the fire brigade. It's feeling like shit and not having the energy or creativity to put the make up on that I know will make me feel human again. It's weight gain, muscle loss, abdominal bloating, rashes and dry skin, smelly body parts and no energy to lift my legs over the bath for a shower half the time, making do with washes and dry shampoo, and feeling so fucking terrible for it being that way.

It's wanting to do everything and having the energy for almost nothing, and it's dread before you do something because you know what comes after - more pain and fatigue. I try not to let it suck all the joy out of my life but when you know you're going to pay for every good thing it can be wearying. It's sleeping all the time or hardly at all, and not making any difference because I still feel like shit either way. It's crushing fatigue which sometimes erases my optimism, but not always. It's making the most of the good days and beating myself up on the bad ones, and there are a lot of the latter. It's avoiding too much movement as that causes pain, and worrying this enforced sedentary lifestyle will be the death of me. A choice - exercise and be in agony or avoid it and be unfit. My breathing the last few months is terrible and I know this last big flare up I had - the one which lasted about 6 months - has seriously fucked up my fitness. I don't know if I have the fight to get it back, and I know if I can't arrest some of the damage my future is a scary place indeed.

It's missing out and knowing it, feeling bad for not being able to do much more than exist, knowing that any hopes or dreams I had for myself have vanished, and learning to live in the day to day as thoughts like that aren't good for my mental health. It's starting off each day with a massive deficit and always trying to play catch up but never quite getting there. Everything is tiring. Everything is hard. It's like jumping into a river wearing a heavy old woollen blanket and then wondering why it's so hard to swim with this massive weight you haven't got used to yet. You should know this impairment is there, but you still expect it to float away one day, but it just gets heavier, like your hope is making it worse. It's being physically (and sometimes mentally) impaired but still holding yourself up to the same standards you did your whole life, and constantly disappointing yourself.
 
Some days it's hard just to get out of bed, knowing the tasks the day holds are too much to think about, let alone do. And just when you're ready to give in or give up, a bittersweet day comes along. You sleep really well for the first time in months and wake up full of enthusiasm and pep. And then, only then, you remember how fucking hard it is the rest of the time, because when you're in this constant grind you don't know anything else, you can't see the wood for the trees. And you so want to run with this gift of a day, but you know what'll happen if you do. So even on the rare good days, they're actually not that good. They're just a reminder of what your life used to be like, like you sent a postcard into your future from a time when you were once well. Remember what it used to be like to work, old self? Remember the joy of long walks and dancing? Remember the excitement of getting up to a new day full of possibility, when your actions didn't have to be carefully weighed and measured for what they'll take out of you? When life wasn't a tally sheet which constantly shows a loss? Remember that? And then you do, and all is sadness.

I constantly wish I could do more, be more, and not have to expend so much energy to exist. It is what it is, and many lessons have been learned about myself and life itself, but sometimes I wish it wasn't quite so difficult. 

Gentle hugs to all the Spoonies out there.

Thanks for listening.

P.S. If I can haul myself out of bed whilst there's still sufficient daylight I'll be posting an outfit later.

Recent make up and nails, and a health update

Hiya pickles!

I thought I'd post a recent make up and nail look I did in the absence of other things. Again, my skin isn't Photoshopped (I don't even have Photoshop, I use Corel Paint Shop Pro - ha) it's a mixture of camera flash, ELF HD powder and my new regime.

I used colours from the Sleek Au Naturelle palette on my eyes, a Fashionista brow kit and foundation and a £1 red MUA lipstick, which is a pinky red which photographs more pink.

The nails are two ELF shades, a pearly colour called Moonlight, and a sparkly one called Twinkle. I used one coat of Moonlight and about 4 of Twinkle. Neither colour is still available as ELF have reformulated their nail polishes, but you could easily do something like this at home with a nude polish and a sparkle top coat. I think of this as sparkles on snow.

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I've been feeling really ill recently, much more so than usual. Regular readers will know I've been struggling with insomnia for a couple of months, but I've been on the slide since June. I'm sleeping more hours now, in fits and starts. I can go to sleep any time from 11pm to 8 am but I don't sleep through - I wake up a few times and can't get back to sleep for an hour or two each time. Depending on how long the periods of wakefulness are and how often I wake, I can still be in bed after sundown some days. On a rare day when I'm up in daylight, I forgo all else and take photos for the blog. Because my sleep is so broken and unfulfilled I need a nap every evening, so I spend a huge amount of time every day laying down. I've lost my appetite almost entirely and am forcing down one meal and a snack every day to keep myself going. I'm pretty sure I'm malnourished (oh the irony - a fat malnourished person!) as I've had deep splits in the corners of my mouth for about 6 weeks now. The thought of food actually makes me feel sick most of the time and I've become so weak. My asthma has got much worse and even bending over knocks the wind out of me. I feel like the life is slowly draining out of me and the stress of getting everything ready for Christmas isn't helping.

I usually love Christmas, but this year it's too much. I've cut back on posts because I have no energy, although I do have a few Christmas outfits to share. Christmas is a time where we dart about here, there and everywhere to see as many people as possible, but I fear I'm going to be spending most of my time asleep. Is this it for me? Has the CFS/ME got worse? Is this my new reality? I hope not. I'm scared. I'm struggling. I'm worried I might soon need a carer or a cleaner - I can't do it all any more. I haven't discussed this possibility with my husband but there's a very real fear I've crossed the line into needing care, and I don't know if I should be fighting this with every fibre of my being in the hope I can make myself stronger, or give in. There's so much loss with chronic illness, and right now I've lost the ability to look after myself and my home. I feel so sad right now, but am hoping for better days.

Thanks for listening.