Feeling lost

Unfortunately I've injured myself - my muscles seem to be much more easily damaged since I've had Fibro.  This has left me unable to do very much at all.  My positive mental attitude has disappeared and I do feel very fed up and sorry for myself.  It is like existing in a limbo where there are so many things I want to do, but I can't. 

The one thing I am trying to do, to stop myself going totally insane, is crochet.  I'm aiming to make four blankets before Christmas for gifts.  Normally, this would be impossible, however I literally can't do anything else at the moment.  It is my little lifeline.  I am bored stupid and just hoping to heal up soon.  I've been told 4-6 weeks.  

Every time I think I'm seeing a glimmer of hope, another shitty thing seems to happen!

Getting prepared for big changes

As I wrote in my last post, I am now facing big changes.  I need to get prepared for a massive drop in income.  

I am minimising overheads:

- cut Sky (Kids will be rocking in the corner.)

- cut Netflix

- cut Deezer (Husband is clawing at the air and screaming 'Noooo!!!!' at this one.  He keeps claiming we are going back to the 1980s.  I intend to present him with a Walkman and a mix tape to console him over his loss.)

- cut mobile phone and broadband packages as they come up for renewal in the new year

- meal plan and reduce food spend (We are pests for treats and a weekly take away.)

- move a loan to a credit card via an excellent money transfer offer (Substantially reduces monthly repayment.)

I am keeping the gym because I can't cancel until next summer, but I need to make the effort to actually use it.

The next thing I plan to do is work on myself.  I need to get well for the process of looking for work, let alone holding down a job.  

I have recently found I am having a problem with wheat.  I said a while ago I was going to try the FODMAP diet; I never quite did it!  I intend to do this now.  More and more of the things I am reading suggest that sensitivity to gluten or other food intolerances might cause inflammatory responses in the body, which could be at the root of many illnesses like Fibro.  Whether or not this is true, I think it's worth a try.  At the end of the day, reducing sugar intake (including sugar via carbs) can't be a bad thing.  I watched a BBC documentary about Type 2 Diabetes last night.  I know I am a candidate for developing it and have been fairly nonchalant about it in the past.  However, watching a woman essentially lose both of her feet and then a large part of her leg over a series of amputations to keep the disease at bay was terrifying viewing.  I am going to keep this in mind and aim to spend the next few months controlling my diet and using my gym membership.  I don't want my future to be a wheelchair in my 40s and possible diabetes with the horrific side effects that it can bring.

Change is now.  It has to be.  

Staring into the abyss

Well, the worst has happened.  My health means that I can no longer continue to work full time so it appears that I am out of a job.

This is terrifying: I can't afford not to work, not only because we need two salaries to pay our current bills, but also because my job is a huge part of my identity.

I am out of work and a time bomb is ticking that says I need to come up with a solution and fast.

Things I know for sure:

1.  I am well qualified in my field and I want to work, so I am motivated to look.
2.  Since being away from work, I have realised how much it has affected my condition.  I am not well, but I am also not in the state I was when I was trying to work.  A reduction in how much I work is sorely needed.
3.  I might be able to qualify for some financial support, although this is my last option as I would rather work.  It might become necessary to explore this route as a back up plan.
4.  There are jobs I can do within my field and not work full time, but I have to do enough work to cover bills.
5.  I need to vastly improve both my physical and mental health in the coming weeks to make me fit for job seeking, interviews and, hopefully, employment.
6.  I love www.moneysavingexpert.com.  I will be turning there for help to reduce outgoings.

It feels bleak at the moment, but I am hoping that opportunities will emerge from this period of instability.  I know my job has been the main contributing factor to how my health is now, so this is my chance for doing things differently.  If I can keep the anxiety about money at bay, this might be the beginning of a whole new chapter for me.

Let's hope so :).

FODMAP for health?

After a bit of reading and contemplation, I have decided to have a go at the FODMAP diet.  The reasons for this include the link between Fibro and IBS; the fact my bowel symptoms have worsened and my increasing suspicion that I am sensitive to gluten.  I'm going to have a go at a gluten free approach to the plan.  I probably should have tests done, but, frankly, I am sick of going to the doctor.

The whole thing is daunting: food is my crutch.  To give up many of my beloved carbs is going to be very, very hard.  

I am also about to go on holiday, which is probably the worst possible time to start it.  However, I don't think my body is giving me much choice.  I woke up today in pain.  My legs, hips and back all ache and my guts are sore.  I know I am sick and my holiday won't be much fun if I continue to feel like this.  I'm going to give it a try.  No doubt it won't be perfect over the next couple of weeks, but it might be better and I'm willing to go for that.

Now to learn what I can and can't eat.  It is a minefield!

Today:

Pain - 6/10

Energy - 3/10

Mood - 4/10

How to heal when nobody is helping

The upshot is that I have a fibromyalgia diagnosis and I have been left to deal with it.  If it gets really painful, the doctor offers me meds.  The ones I've tried in the past take away the pain, but made me feel so drunk that I couldn't cope with normal life anyway, so were pointless.  I want to be able to function.  That is key.

I am a fortnight 'rested' and still have hardly any energy.  I need to seek out some of my own solutions.  I am feeling quite failed by the doctors, so am going to start to explore some other pathways.

Things that I believe:

Stress has caused my illness.
My body is sick and my lifestyle has triggered this.
My whole body needs to heal.
My mind also has some healing to do.

The question is, how do you heal?  I don't even know where to start because there seems like so much is wrong with me and conflicting advice pops up everywhere.

I intend to do some research with an open mind, putting cynicism to one side, and see if I can come up with any ideas that will help me start to feel better.

Watch this space.

So far, not so great

I have to fight my over-determined brain.  I set off yesterday, filled with good intentions: to be careful with what I ate (no wheat, no sugar), to do some gentle exercise (pilates), to do some bits around the house (washing).  Well, by 5pm I was drained and shaking.  I inhaled most of a packet of Hobnobs.  (Everyone knows Hobnobs are evil - the crack of the biscuit world.  Especially the chocolate ones.  I would view with suspicion anyone who could eat just one.) 

I have to accept that this process needs to be baby steps.  It is okay to sit rest, it is okay to do nothing.  I find this incredibly difficult - hence ending up ill in the first place.

Yesterday, I said I had no interests.  That wasn't 100% true.  When my daughter was diagnosed with Leukaemia in 2011, our lives ground to a halt.  I went from working 70-80 hour weeks to staying in hospital for months.  The experience was incredibly traumatic (and I suspect a trigger for my current condition), but it was also a very long and slow process with most days just being a great, grey plod to the next.  I couldn't read much as my brain wouldn't let me think or focus.  We watched a lot of rubbish television.  In the end, during one period away from hospital, I used YouTube and taught myself to crochet.  It was a very sweary evening, but I managed it.  It gave me something to do with my hands other than eat crisps.  I told you I am an eater - imagine what those 2.5 years of watching my little girl (who was actually 12-14 at the time) endure chemo did to my weight.  Crochet was a bit of a relief.

So I got it out yesterday and did a few rows of a blanket I started months ago.  It was very soothing.  It is tough to just sit, whilst feeling guilty about work and the state of the house, and crochet.  However, until my body tells me otherwise, I have no choice.

Why is my blog called, 'The Great Fibro Experiment'?  Because I actually started it a few months ago with the intention of trying things that might help me.  I never did anything with it.  I've retained the title because I still am conducting an experiment: to see if I can have a happy, fulfilled and healthy life with this condition.  

Where to begin?

I have a chronic condition; a limiting illness; a disability.  I have fibromyalgia.  

What I really have, I think, is a disease of accumulated stress.  I have ignored all of those warnings you hear about 'down time', 'looking after yourself' and 'relaxation' and managed to get myself to a place where I just can't function in my normal life anymore.  

I am a warning to others I suppose.  

I honestly think modern life and the values that are sold to us as desirable are very damaging.  The expectations of what makes 'success', the pressure on everyone to have it all: the career, the family (including the healthy, adult relationship at the centre of that), the fit, attractive body, the money, the interesting hobbies that give us a sparkling social media output.  I bought into all of that, thanks to an adolescence of glossy magazines and too much television.  People who know me might be surprised to read this, as I don't appear to have much of any of it now.  Believe me, the intention was always there, but I was regularly thwarted by a combination of life and trying too hard.

I suppose each time I didn't quite get one of those things, it was another little chip off my soul, another little failure to achieve something that I was 'supposed' to have.

The model of perfection doesn't include a 2 times post C-section body, disabled children, a child with cancer, a money-pit house that will take years to repair, debt, a career hard won but challenging - sucking time and energy - with little opportunity for a woman who has to contend with all of those things listed above.  Yet I tried.  I pushed through it.  I was 'strong'.  I wanted to succeed.  I wanted all those things you are suppose to have for my family.  I continued to bash my head against that great big wall of personal achievement.

How foolish.  

Reading this back, it is now easy to see how I could end up here, sitting on my sofa when I should be going to work, signed off and facing a written warning, hardly able to function.  This is the first time in over a week I have been able to look at a computer screen and type.

I am depressed.  I'm not going to lie.  The depression is secondary, I think, to the pain and lethargy.  I am too tired to do anything, it is frustrating at first but then I become more and more listless until I stop caring.  Everything is a mess but I am too sore and tired to pull myself up, dust myself down and do something about it.

The other thing I do is eat.  I eat because I am bored, because I am depressed.  I have turned into a sugar monster when I don't even have a sweet tooth!  I have put on 21lbs in the last few months with no signs of it abating.

And the worse thing?  I have turned into one of those people, digging for sympathy, self-pitying and hopeless.

This is not what I want my life to be.

The first thing I need to do is reassess.  Obviously, the original plan is not working for me.  I need a different life.  This is a transition moment.  It is sink or swim.

Areas that need to be dealt with:

Health
Relationships
Work
Money
Interests
Home

Health: First and foremost.  If you don't put it first, something will force you to.  I have learned this - it was always the bottom of the list.

Relationships: Everyone in the family suffers when someone is unwell.  I know my children are worried.  This is not good.

Work:  The most worrying one as I can't afford not to work.  I've always worked full time and my work is a large part of my identity.
  
Money:  Linked to work.  We have some debt, we have things we want to do.  If I lose all or part of my income it will be a massive change for us.

Interests: Because of overwork, I have none.  This is a problem.  There is nothing to me other than job and home.  I don't even have friends.

Home: A huge mess with even more work needed.  A hurdle too big to contemplate at the moment.  It is difficult to be on it when your body says no.

I think what this blog will be is a way of trying to do it differently, of seeing if a person can change and whether it is possible to really enjoy life with chronic illness.

To be honest, I'm not sure I can claim to have really enjoyed life before chronic illness.  

This is me, seeking solutions and purpose.