How i try to keep fit despite having ME/CFS & Fibromyalgia!

So i get asked a lot (and i mean AN AWFUL LOT) about how i try to keep fit and healthy despite being chronically ill. Now i say TRY, those are the most important words here. I am no nutrition/fitness expert, i just simply no what works for my body and what is best for me with the advice from Pain clinic teams, physiotherapists and neurologists.

The first thing i TRY (this is a running theme btw, i am trying not giving up, i may not have made any progress yet because i relapsed a little but i am still trying) to do is eat things that benefit my body. I cut out the things that literally do nothing to aid my fitness, health or energy levels. The things i cut out are carbs (except fiber) and sugars, which is a carb anyway so ALL CARBS (minus fiber) are evil for me. 

I don’t know why its like this for me, well its not just me.. a lot of people react badly to carbs. I always have done to be honest, even before i was ‘sick’. If i ate a sandwhich i always felt bloated and sluggish.. porridge always made me so lethargic despite how much i love it.. potatoes weighed me down a lot too. Sugar has always been a love hate for me, it effects me so much and i get really bad energy crashes even if i eat the smallest amount.

So.. what do i eat if i try to cut out carbs? Well i don’t cut them out completely.. i do eat veggies.. LOTS OF GREEN GOOD veggies.. i also eat berries! I do however stick to under 20g of carbs a day. This does give me some leeway to play around with what i eat.. I use Stevia as a sugar replacement and almond/coconut flour as a zero carb alternative so i can bake lots of goodies that make me not miss sugary treats.

I also give my body a lot of healthy fats so it has the energy to burn and stay functioning.. and the right amount of protein to give my muscles their strength and to power them back up after exercise. This way of eating is known as the Keto diet. Basically high fat, medium protein, low carbs. It works for me and MANY of my friends. I enjoy it, its fun and doesn’t feel like a diet when i eat Bacon & Eggs every morning.

Exercise is my weakest point of trying to stay healthy, i am very weak physically now and cannot do much. However, i do find certain classes at my gym really benefit me. The main one i love is Body Balance, it is a mix of Yoga, Pilates and Tai Chi, it is super relaxing, strengthening and has enough movement for me to break a sweat and burn some serious calories.. average is around 300-400 per hour long class. I also like a pure yoga class, this is more intense for me and is currently my upper limit but it pushes me and i need that little bit to keep me getting stronger.. i only do one yoga class a week and aim to do 2 body balance classes a week.

On top of these classes it has been recommended to me by my Physiotherapist that i start doing some small weights to build up strength in various muscles.. mainly my legs as my knees are constantly in pain. I do some leg lifts and various machines to strengthen them up. I also do short stints on a static bike to get a little bit of cardio in. I can usually last around 10 minutes on a bike before i feel like i may die. But it is all progress.

The most important part for me is staying healthy, by that i mean not contracting any additional illnesses, aka colds or flu or strep throat, meningitis (again) etc etc. I try to avoid going to multiple conventions in a row as i believe this is how it all started really. I don’t hang out with friends who are sick. I avoid the doctors surgery unless i really need to go in. I try to sanitise my hands a lot and generally just be wary of how im dressing and how certain things could make me sick.

Now, this is the tough part for me, i want to show you some BEFORE photos of my body. They are taken today, i am classing today, the 1st of October 2014 as my start date. Why? well because i have finally found an exercise and nutrition regime that works for me, i have lost 7 lbs before doing these things, my energy and happiness levels were super high and i generally was a lot more motivated for life and able to do things back in June. Since then i had massively relapsed after my trip to NYC and i have been working up my strength to get back into everything.

I know what i need to do, so hopefully showing you some before photos will encourage me to prove myself and not give up. Now before anyone else feels the need to chime in.. i know i am not overweight.. i know i am not ‘fat’.. i simply know this is not naturally the way my body should be.. i all my life have been on the slim side of things.. up until i got sick i was a size 8.. all my life. I am now a size 12 and my body is just not working the way it should be. I simply just want to get back to my previous body as much as i can despite my illnesses. I know the inside will never be the same and i will always be sick, but if i can get back in shape and control my nutrition i can have a better way of life and feel happy about myself again. This is not for any of you, its not even for Martyn (he is actually very happy with my body right now), this is FOR ME. So i feel better, happier and proud of myself. Now without any further explanation here is what i am currently working with.

Front on.. feet together.

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Left side.. feet together.

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Right side.. feet together.

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Back.. feet together.

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Front on.. legs apart!

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Back.. legs apart!

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Left side.. Legs lunged!

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Right side.. Legs lunged!

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I am very lucky that compared to some struggling with similar health problems (hugs fellow spoonies) that i am in pretty good shape considering. This is simply because i was stupidly thin to start with.. too thin for my taste, putting on this weight has shown me that i do like some curves, i like that i finally have a womanly figure. However, im just too heavy for my frame right now and would like to lose around a stone. 

I currently weigh 10 stone 4 lbs. If i could get down to 9 stone 4lbs i would be VERY happy. A comfortable size 10 all round would be perfect. 

Thank you for reading this, i hope this has helped those of you struggling too or just simply given insight to those of you who wonder what i do to try and be healthier. Hopefully sometime soon i will be able to share some progress pics if you’re interested and we can celebrate my successes.

As always thank you for being you, for supporting me when i am at my lowest and for enjoying my happy times too. <3

I wish...

That there was a place you could go to that would test for everything on the spot. Let’s call it a diagnostics center…You go in, tell them your symptoms, and they run every test known to man in one place. Bloodwork, CT scans, MRI’s Xrays, etc…a one stop shop. No more 10 doctor visits for 10 tests in different locations!!!

The Concept of Remission

I wrote this quite a while ago but haven’t been able to share it until now

Having a period of remission when you’re chronically unwell is an incredibly surreal experience because it conflicts with everything you’ve taught yourself and everything you’ve learnt throughout the duration of your illness. It’s very unsettling in a way because it calls for a total readjustment of your routine and it raises a lot of questions about the way you live your life, about what you can and can’t do, and about how you should and shouldn’t behave. The adjustment in your behaviour is also met with a fear of misunderstanding from your peers - if they know you as the bed-bound or house-bound person, how are they going to react upon seeing you in this different capacity? On top of dealing with your newfound and unfamiliar sense of health, you have to struggle with how others perceive you, or how you imagine they perceive you. I think one thing a lot of people don’t realise about the experience of being chronically unwell is that it’s accompanied by a constant guilt over the effect it has on the people around you and a constant fear of judgment from them. Often you have to choose to present yourself as either ‘the sick person’ or ‘the healthy person’ because it feels as though people can’t comprehend the idea that health is a fluid concept that’s susceptible to rapid change.

Whether or not you’re consciously aware of it, external presentation is a big factor that you often have to consider when you’re unwell because it so heavily impacts on how you’re treated by people. On the one hand, the lack of compassion and understanding shown by governments and often medical practitioners means that you have to seriously fight to be heard and to be provided for adequately - you have to present yourself as ‘the sick person’ - the desperate invalid - just to be able to receive the support you need. You’re made to jump through hoops, to prove, unequivocally, the full extent of the impact of your illness, just to satisfy their definition of ‘sick’. On the other hand, however, you don’t want to be perceived as ‘the sick person’ by the people around you - your peers, family, coworkers, friends - because our society seems to have somehow adopted this terrible mindset that to be sick is to be weak or incapable or unworthy, even. It’s a terrifying sensation to be known as ‘the sick person’ to the people closest to you because their perception of you changes, whether they’re aware of it or not. You’re often only thought of in relation to your illness and while you truly appreciate people’s concern, sometimes, just for the sake of your sanity, you need them to remember that you are a person outside of your illness - that you’re just you. You’re the person who adores dogs, who cries over Disney films, who has a serious tea addiction, who hates parsley, who feels happiest when it’s pouring rain, who secretly loves Celine Dion, who buys too many t-shirts and who plays music too loudly. You’re this whole, entire person who is completely separate from your health and your identity does not revolve around your illness. You want people to understand that sometimes, however briefly, you need the opportunity to forget that you’re unwell - to forget about the drugs and the walking stick and the wheelchair and the oxygen concentrator and the doctors and the hospitals and the blood tests and the x-rays and the medical forms - and to simply enjoy whatever it is you’re doing in your present moment. You need people to understand that life can’t always be about being sick because to focus on it constantly is utterly exhausting and, seriously, who has the time?

So, what do you do when your health is in remission, even if only for a small amount of time? You could continue to present as ‘the sick person’, but denying yourself the opportunity to relish your sudden improved quality of life seems ludicrous. The issue is, you have to re-learn how to be ‘the healthy person’. You have to discover what your new limits are, you have to explain to people that you are suddenly ‘the not-so-sick person’, you have to learn how to give your life meaning and how to gain a sense of purpose, you have to constantly question yourself, you have to separate yourself from the ‘sick person’ label. It’s both a terrifying and liberating experience. The thing about being unwell is that it’s a constant balancing act and it creates an ongoing and everlasting internal conflict. You’re always battling with yourself over what you and and can’t do, you’re always trying to push yourself to do one thing or another - nothing is ever an easy decision, largely because of the unpredictable nature of illness and largely because the unfairness of your situation is so incredibly blatant. Being forced into a life of ill health is a huge, unwelcome burden and so you never really stop imagining yourself as someone who is capable of doing everything you want to do - you never completely resign yourself to being sick.

I think ultimately you have to remind yourself that regardless of whether you’re having a better day or week or month, you are still unwell, you still have to make allowances for your health and you still have limits. You’re allowed to look after yourself, you’re allowed to say no and you’re allowed to be kind to yourself. Periods of remission don’t belittle your experience of being unwell, they don’t detract from the countless amount of days you’ve spent coping with symptoms and they don’t mean that you’re suddenly expected to be able to do everything a healthy person can do. The best course of action to take when you’re feeling better, even if it’s fleeting, is simply to enjoy it. Don’t burden yourself with the idea that you’re suddenly obligated to keep up with ‘the healthy people’. Just do what you want to do, what you feel able to do, and allow yourself to enjoy this small piece of respite.

First seen in The Pillow Fort Magazine, Issue 1 - reprinted with permission.

#SpoonieProblems.
Just a little drawing I whipped up to make me feel a little better.
Made with SketchBook Pro for iPad, used the Jot Pro stylus by Adonit.

►PLEASE, IF YOU CANNOT DONATE, SIGNAL BOOST OR REBLOG THIS!◄

http://www.gofundme.com/helpmefundaservicedog

Hi there!
My name is Hannah. I am Eighteen years old and I live in a suburb in Sweden. I go to school for two days a week studying civics. 
When I’m not in school I’m either at some kind of health-related apointment or at home doing daily living, art and hanging out with my 3 petrats, possibly with homeaid being there. Wherever I am It’s always about surviving, making it through the day.
I wake up exhausted, in pain, stiffness, feeling sick and being dizzy. A lot of days I cannot make it up from the bed in a few hours and have to depend on my friend who I live with to give me medicines, food, water and whatever I might need. If he’s not home i’, bluntly put, screwed. Everything hurts. If I lie completely still it’s sometimes manageable but forget about moving. As if I wasn’t in enough pain already there’s probably a bad headache or migraine on the way too. Other days I make it halfway and nearly faint onto the floor, depending on someone to give me something to eat before I faint completely. On a good day I might make it to the kitchen to make my own breakfast (with help reaching certain things).
Every step hurts. It hurts in my feet, my legs, my back, my neck, everywhere. Intense pain shooting through me every time I move. I’ll feel sick and be unable to keep my balance. I’ll notice the signs of an intense migraine coming on, wondering when it will explode, like a ticking bomb. I’ll be foggy, unable to think straight, unable to pick out words for what I want to say, like a zombie. The medicine will begin to give effect and make me even more foggy. Trying to bend is out of question. Want to get something from the bottom-drawer? Too bad. I have to rely on someone else, in this case my friend who I live with, always being there. The stress is always haunting me, what if I get thrown out? What if my friend moves? I realize how I would not survive on my own, and that too, hurts. Now this is just the fibromyalgia on it’s own, not the ADD, autism, OCD, ibs, depression, panic attacks, flashbacks, paranoia or selfharm.


Now to the goal with this funding…
(the goal might seem extreme but service dogs are very expensive here being uncommon and having to be paid for all by ourselves. We also aren’t allowed to train them ourselves. HERE is a great link about why they cost so much.)
I want to be able to get a servicedog to help me become more independent and make me able to do things normal people can, with less suffering too. I want the dog not to rely on but rather to become more independent. I want to be able to survive by myself and get through my paindays by myself. I cannot rely on anyone always being there anymore.

I want to do things myself, anything that a healthy person can do! I want to be able to buy groceries, do laundry, make breakfast by myself in the morning, survive by myself on bad days, be able to use public transportation, go to the mall, be able to walk places without it being torture!

The dog would learn how to retrieve named objects for me (VERY useful when I’m stuck in bed and need medication, phone, food etc), pick up things i drop (I drop things without noticing it a lot), pick up things from the floor, open drawers, pull me forward when the fatigue is too bad or in places like stairs, support my balance, open lids (like the one on the trashcan i usually can’t reach myself), calm and notice/alert panicattacks before they go to far, put things away, help with laundry, get me my medc, wake me up when my alarm goes off, interupt selfharm, interupt stimming, provide a buffer/shield for me in crowded areas, extinguish flashbacks and overloads by bringing me into the here and now, provide deep pressure during panic attacks, stand behind/in front of me or circle around me to create a barrier, help pull off a jacket, pants, socks or shoes and more.

Except for these great tasks it would also provide me warmth (soothes the pain a lot), security, independence, make me exercise more (which is really though to get yourself to do when you’re dealing with this pain but it helps in the long term!), make social connections easier and enable me to do a lot of things I can’t now, like going places by myself and surviving without other persons always helping me out. 

Having this dog should provide me with a much higher level of independence, exercise, energy, social connections and security as well as just enabling me to live a more normal life with less pain. It would mean the world to me to get a bit of my life back and manage to do things on my own, with help of 4 paws. Every little bit helps, really. Even if you cannot donate you can help by spreading the word. Thank you so much for reading!
Love, Hannah.

I saw a post with some awareness ribbons and it made me wonder what the ribbon for fibromyalgia is.

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It’s purple and it has a butterfly and that makes me kinda happy.  I really expected something I would hate cause that just my luck.

I need help. Three of the hardest words I have ever had to say. So here is my story and its’s long but I will try to keep it short. I was diagnosed with fibromyalgia at the age of 24 along with chronic fatigue and a few other small things.  since then I have struggled to keep my head above water,…

This is my mother Robin, and if anyone deserves this money to get her life back on track it’s her. Life has thrown some really hard things her way and through it all she has been a beautiful person, and an amazing mother. Even a share would mean the world to me. Thank you so much. <3

To all the people with invisible illnesses:

You are so strong for getting out of bed. For going to work. Or staying home and taking care of yourself. For living. For smiling.

We fight a battle against our bodies and minds every day.

Just because others can’t see, feel, experience, or understand your illness doesn’t make it any less valid.

Your illness is real. Your pain, struggle, and obstacles are real.

Don’t let anyone ever try to convince you otherwise.

Shout out to you for being here even though it’s really hard.

I see you.

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