The Spoonie Exercise Guide*

Hi lovelies!

This is a collaborative post (not written by me).

If you are someone living with chronic illness, whether that be fibromyalgia or chronic depression, looking after yourself can be one of the last things on your mind. On days where you are really struggling, it can be hard to just get on with the essentials of the day, let alone doing anything to look after yourself. But for things like exercise, as hard as they may be to get up and get going, can actually really benefit those of us living with chronic illness.

Reasons to Exercise

The reasons to exercise can seem pretty self-explanatory. We all know about the standard things like calorie burning and helping you to sleep better; exercise is good for your body as well as your mind. This is something that we all know. However, the reasons to exercise are the same for people with chronic illness or something like fibromyalgia as well. In fact, if you are someone with Fibro, The NFCPA (or National Fibromyalgia and Chronic Pain Association), have explained how not moving your muscles can cause them to decrease in size, or cause them to atrophy. And when this happens, it can cause even more pain, and so the cycle goes on and on. Not to mention the benefits for your mental health, as exercise can give you a distraction, a release of happy hormones to lift your mood, and help to eliminate stress as well.



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Benefits of Exercise

Again, like the reasons to exercise, the benefits of exercise are not something new and that we don’t already know. But because they are so obvious and we all know what they mean, there are still many of us that don’t exercise, even if we know it is going to help alleviate some pain or suffering of chronic illness. The benefits of exercise really are great for Fibromyalgia patients. Some of which are:

• Getting better sleep, which is a must if you are lacking energy
• Better range of motion can come as a result of exercise, making everyday activities much easier
• An improved mood is also a great benefit, which can be much needed for spoonies and mental health sufferers
• You do burn calories when you exercise and that can help you to maintain or control your weight
• Having an increased energy can be a result of exercising which can be needed when everyday life can be painful or a struggle

Relieving pain is one of the number one reasons why those with long-term pain should exercise

It is important to note that these things are not cures to your chronic illness, but can go a long way to helping you feel better, if only for a while. There won’t be many of us that are perfect in our exercise routine, it is an area that we need to work on. But finding something that you enjoy really is the number one thing that will help you to stick at it and hopefully, make you actually want to exercise. Here are a few of the things that you could try, that will all help with those benefits listed above:

Pilates or Yoga

For those of us with chronic illness that haven’t been taking care of ourselves, a high-impact aerobics or spin class isn’t something that springs to mind immediately. Instead, yoga or pilates can be a great option as it can be gentle and really helps you to use your body weight to strengthen yourself, rather than using weights. You never know, you might find yourself wondering why become a pilates instructor, because you enjoy it so much. But it can be a great way to feel better, and help others to feel better too.

Swimming

If you are someone that is overweight as a result of chronic illness, then you might find that something like running is really difficult. Instead, swimming is a great alternative as there is much less pressure on your body and on your joints, but you still get in a great workout. There are so many things you can do in a pool from swimming lengths to talking part in an aqua-aerobics class.

Walking

Simply moving more by walking more is a simple way to lift your mood and hopefully, help to alleviate your pain a little. You can do it around where you live, where you work, or anything in between. It is great as it is practical too; need to go to the shops? Then you can walk there instead of driving, to get two things done at the same time.

Thanks for reading.
Leah xoxo

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. 

Computer says no

Hi.

Being me is exhausting.

This thought came to me earlier, and I had to laugh because it's so true and the realisation was so unexpected. The biggest paradox about chronic illness is you need a hell of a lot of energy to deal with it. Pain, fatigue, allergic reactions, insomnia and more dominate my landscape on a daily and weekly basis. Sometimes I keep a symptom diary for shits and giggles, but staring that misery in the face brings me down.

Time moves on and my old life seems like a film I once saw but can't quite remember. My 'normal' is based on over 7 years of chronic illness, where pretty much everything is shit and only the really shit stuff is particularly memorable. It's easy to forget how challenging chronic illness can be, even whilst living through it. I feels like being under siege so I don't get to count the ways things are hard because there's always something else. There is no let up and I couldn't tell if I've ever had a truly asymptomatic day in the last 7 years. Plans go by the wayside; hopes and dreams shrink like puddles on a sunny day, and I cope as best as I can and kid myself I'm doing all right. I can only tell if that's actually true in retrospect.

It's only when life throws a curve ball that I realise how small my reserve tank is. We still don't know what the issue is with my step dad, and it's stressful. I'm not just worrying about him, but my mum too, and what will happen should anything happen to him. He and my mum have rallied over the last couple of days (inspiringly so) and I hope the hospital will have answers for us all soon, but I am ground down to dust. I don't have the energy for optimism, or fear, or loss. There's a possibility he may have to go to a London hospital if they can't find a reason for his predicament at the local hospital.

I left my home town when I was 19, and what seemed a good idea when I was young and my parents were virtually whipper-snappers too doesn't seem such a good idea 20 years later. They were the age I am now when I left, give or take a year or two. I should be there for family crises, and I'm not. I'm 60 or so miles away, with chronic illness baggage and no transport outside of the Mr's chauffeur service. And it weighs on me.

I've been trying to take my mind off worrying by keeping busy, and I held myself together extra tightly, lest everything pour out of me. And for a while it worked, and then I couldn't find the end of the roll of sellotape to wrap a parcel, and I pitched the tape across the room hard enough to wince when it hit the double glazing. I realised stress will leak out no matter how tightly you hold yourself, and maybe more so the harder you try to keep it together. Maybe it's better to admit you're a paper bag rather than an oil drum and expect it to come out, even encourage it to. I'm working on that.

I'm tired, so tired. And sad, because I don't like being reminded how one puff of air brings this house of cards down to the ground. And that's what illness or disability brings you down to. You're one fuck up, one mishap, one misfortune away from falling to bits at all times.

Do people see past the smiles and the selfies, to the truth of me? Do I even want them to? Is it better to be thought of as a happy, well person who's occasionally blighted by ill health, or to feel the pity of being an 'out' permanently unwell person with a litany of problems? (Which I rarely choose to reveal because the truth is ugly and boring.)

Right now computer says no except for vital functions only. Backing up data. System shutting down in 3, 2, 1.

Blogging might be a bit hit and miss as I try to get back on an even keel. 

What's your favourite way to de-stress? Thanks for reading, and be kind to yourselves. xoxo

Fibromyalgia, IBS and white bread

Hello loveys,

For as long as I've had Fibromyalgia, I've also had IBS. It was one of my first symptoms, and it still occasionally gives me hell today. Gradually I've worked out the things which upset it, the biggest of which is white bread.

I've mentioned before in the past how huge my stomach gets when I've eaten white bread, but because I'm usually smart enough to save myself the pain of eating it (and God, does it hurt if I'm stupid enough to have it a few times within the same week) I've never actually taken photos as evidence. I had a theory that if I had white bread toasted somehow it wouldn't affect me as badly, but this was proved as absolute bunkum a couple of weeks ago. James and I went to stay with his parents in London for the weekend and I forgot to take my bread, so I had white bread toasted a couple of times over the weekend. I knew I was really bloated at the time, but I didn't realise how much so until I took photos on the Monday and compared them to the ones I took the Thursday before. Here they are.

Thursday is on the left, Monday is on the right. I'm sure you'll agree I look like I'm about to give birth in the Monday photo.

White bread is absolutely a poison for me, but knowing it and seeing it are too different things. Now I can see how ridiculous the damage to my body is when I eat it, it has totally put me off. A moment's pleasure isn't worth the lasting bloating.

While I'm here I thought I'd mention some things which also aggravate my IBS.

• dairy, especially cows milk
• marmalade, except ginger marmalade
• oranges and other sharp citrus
• anything fatty
• raw onions
• caffeine and alcohol (it also affects my bladder)
• sweeteners

What I've changed to make life easier on myself:

• I have soya or rice milk, soya spread (a new change for me) and suffer for cheese but I'm not giving it up!
• Don't eat marmalade except delicious ginger marmalade on brown, wholemeal or granary bread
• Only eat satsumas - oranges are too sharp for my sensitive tum
• Avoid fatty meals - there's a Chinese buffet in town and it's the worst thing for me to eat there
• Cook my onions
• I don't drink much alcohol (probably once a month) and limit myself to 1-2 cups of tea a day and 1 can of diet coke
• I use agave nectar in my tea which doesn't aggravate my bladder or bowel

I'm not going to go too much into the gory details of IBS but the things I tend to experience if I eat the wrong food (or not enough of the right ones) are VERY sudden diarrhoea, terrible constipation (often the two will cycle from one to the other), bloating, wind, stabbing pains and churning sensations like I have a velociraptor in my stomach. Getting enough fruit and veg and plenty of water is really important, and if I do get constipated, it's wise for me to cram in loads of fruit and veg and drink extra water.

Do you have IBS? How have you dealt with it?

Thanks for reading.
Leah xoxo

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

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.