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18 Months On From My Diagnosis With Fibromyalgia

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I’m so sorry, it’s been sooooo long since I wrote about my Fibromyalgia.  I feel especially guilty having been selected as one of the Top 16 Fibromyalgia Blogs worldwide.  I totally meant to blog as I went, but it just didn’t happen.

But I have GREAT NEWS, so maybe it’s been more important that I focussed on myself for a while.

I hope that the information below really encourages people with Fibromyalgia or other similar syndromes, to keep on.  For the first 6 months of trying things, it really felt like I didn’t make any progress at all.  But then it was like a domino effect and suddenly I could feel a difference and got feedback from my body.

Now a days if I look after myself I get immediate feedback from my body.  If I don’t, I get immediate feedback.  It’s simple.

 

My Symptoms

Mum with energyI can move in the morning without a shower – I still always shower first thing as it’s become a habit, but it’s great to not have to have cold showers for the pain.

I have a small flare once a month.  I hardly have any other flares now, as I’m much better at pacing.  The depression does come on during those days, but only lasts about 2 days and I can shake it off.  It’s pretty all consuming when it arrives, but I don’t fear it now as I know it will go.

I have no chronic pain (the kind you don’t want to get up in the morning with, which is apparently worse than arthritis).

I no longer have the weird itching pain in my back near my adrenals.

I haven’t had my hips burn or a big blood bruise in a long time, and if I ever get an ache in my hips I use one of our salon products by Arbonne called ‘Body Gelee’ and it disappears really quickly.

The last big pain that was in my left shoulder and neck went last week – woohoo!

I still have aches and pains, but that is much more bearable, and I’m pretty sure that I will be able to clear those within the next year.  Sometimes I get pain in my head, especially at the back (which is where all this started from in the beginning), so that is the priority to focus on next.

I don’t get a full nights sleep yet, but I get a lot more and I’m not chronically tired.

I still get Fibro fog, which is frustrating, and I get hurt when people don’t understand and think that I’m making excuses.  After all they say ‘everyone forgets things’.  The only way around it is to not overload myself, and be very clear each week on my priority of To Do’s.  I also don’t work on reception at the salon too much, as it’s tricky for me to manage the diary.

I’m back on the probiotics for my stomach since going on holiday, but part from a rather nasty flare up for 3 weeks just before Christmas, I’ve been IBS/stomach pain free.  I have found peppermint tea and ginger tea really helpful though, so it’s possible that I’ve been managing things with those.  Sometimes it’s so subtle you don’t notice that you still have a problem.

I didn’t manage to drop all the weight that I was hoping too, but I am now a ‘healthy weight’ and there is plenty of time to do more next year.

I can now go to Pilates AND walk the dog or go shopping on the SAME day.  This degree of normality means that I can pretty much get away with looking like a ‘normal’ person – people don’t notice me carefully managing what I attempt to do over a couple of days.

I can stay up past the kids bedtime, although not every night and not past 10pm too often.  I do get tired; it’s not a normal tired, it’s a ‘please let me drop from exhaustion’ tired.  And I try not to work or carry on through it.  Sometimes there is no choice obviously, as the kids need feeding, the house needs sorting, but we’ve got some good support now, and I’m much better at asking for help.

I still struggle with the fact that I ‘don’t look ill’ and people often forget.  When they forget they don’t give you much leeway if you are down, tired, or in pain.

 

What have I done

Chance for a cuppa

Cup Of Tea and a chat is good for the soul

Remember to read my old posts 6 months on and just a few months on, and straight after the diagnosis as those were the first things that I did.

I gave up sugar in my tea and replaced it with xylitol.  Then I gave up biscuits.  Obviously I still eat cake!  If I have a couple of bad days back on the biscuits I will get pain in my bones straight away.  It took a long time to get round to it.

Around this time last year we had our first meeting about creating Espiritu Salon And Spa.  I must admit I thought that it was crazy to be doing that with two young children and Fibro and there have been times where it felt like it had done for me.  But it’s such a relaxing place, that it seems to be just as good for me as for our customers.  Plus I think that having a passion for something is really good for me.

Since January I’ve had 1 day a week with Little Dimples as well, which has made me much happier, and since Easter I’m beginning to reduce the working until midnight to only once a week, and make more of the school runs.  To save time with work I focus on listening to my intuition and it never sees me wrong – hmm that is a blog post in itself isn’t it – I’ll write that one soon (ish!).

Surprisingly our house is now busier than it every used to be.  A lovely friend of mine moved in (on and off) in October as she is in a ‘Nomadic’ stage of her life, and then in January we got an Au pair.  It is busy, but the kids love it that way, and frankly we need the help and support with life being so busy starting up a new business.

I ended up publishing my 2nd edition of my book myself, and putting the paperback version and my 2nd and 3rd book aside for a while.  After all there is only so much one person can do.  Sadly I have waved goodbye to a large number of my stats and readership as well, which was a hard pill to take, but again a necessity.

Because of being so busy I no longer have time to go to the woman’s groups or meditation days, but I meditate 3-4 times a week, and always have a relaxing bath for an hour on a sunday morning.  I can definitely tell the weeks when I don’t get to do this.  (I personally use a Shamanic form of meditation, but any kind will help).

I’ve pretty much given up TV too.  OMG she’s a freak you say – I know, that’s what I used to think about people who didn’t watch TV!  But I don’t have time – I play with my kids, keep up with friends (not enough), look after myself and work.  Watching TV doesn’t give me the results I need for the length of time it takes.  I’m quite liking silence now too!

I also have a lovely soft super king bed (not an expensive one), and good pillows to support my neck and always turn off my phone at night to stop myself from playing on social media too long.  To get to sleep I normally play solitaire on my iPhone (in airplane mode), but sometimes I use an app by Hemi-synch that uses binaural beats to help us get a deeper level of sleep.

I’ve actually cut back on the supplements I was taking.  I think that in a way they became too much for my system as well.  I still take:

  • Valerian/Kalms sleep, 5 Htp and Magensium/Calcium at night
  • Vit D3 if it’s not sunny
  • Cherry Active if I’ve done Pilates and walked in the same day

Instead I’ve bought a juicer, and have found it to be great to give me energy.  I don’t just add fruit, I make sure that there is lots of green stuff in there too.

I’ve also reduced the stress on my body from the products that I use on my skin and switched to using Arbonne from top to toe (we use and sell these at the salon) – they are very pure, botanical and free of parabens and cancer causing chemicals.

I’ve been doing Pilates once a week since the beginning, but a few months ago I increased to twice a week to make sure that I never missed a lesson due to ‘circumstances’.  This has made a big difference, so I will post about it separately.

I don’t ever wear tight clothes, it’s either very soft jeans, leggings, or dresses.  Same goes for boots.  I suspect I’d have pain again if I wore uncomfortable clothes, but it’s just become a part of who I am.

We went on holiday again, this time at Easter rather than February – the sunshine makes an INCREDIBLE difference to me.

Lowchens and childrenI decided to reduce my load by stopping taking paid blogging work.  Then went and did another one, and ended up with a dog.  But oh my is she cute, and all that cuddling must be good for me!  A year ago we got 2 gorgeous Norwegian forest cats, I’m sure that they have helped too – they certainly helped my kids to sleep better, but that’s a long story for another time ;)

I stopped looking at all the support forums as I frankly found they scared the shit out of me, and that I really needed to stop worrying about it so much.

I became really grateful to the Fibromyalgia as I realised that it had improved the quality of my life massively, even if it felt restrictive.  It was like a guidance system to how I actually wanted to be – I didn’t actually want to run, or eat crap, or over work, or ‘keep on keeping on’.

I did some healing/therapy work on myself to ‘let go’ of the story of having Fibromyalgia.  Does that make sense?  I’m nearly at the stage where I don’t think that I need it any more in order to guide me to living a happy, healthy life.

I’ve come to terms with the fact that I over did it, and will never again be able to ‘push on through’.  I can now be stressed by not just the world, but too much sound, light, people, mess, junk food or chemicals on my skin – pretty much anything.  I’ve tackled my stress junkie habit and I look after my body – it’s not such an awful punishment.

I haven’t had as much pampering up at the salon as you might think (this sooooo needs to change!).  But I have had a few big treats like facials, massages or reflexology, and lots of little ones like having my hair washed or a manicure/pedicure.  I honestly believe that if I had done this all along I would never have become sick with the Fibro.  I can see now that it’s all very well doing big ‘healing’ of past traumas etc, but it’s also important to take care of ourselves day to day.

I’m getting much clearer on who I am, what I do or don’t want to do, and what my boundaries are (by the way, my blog has just been selected as one of the Top100 on dealing with Bullying).  I had a bad habit of people pleasing, and wanting to avoid conflict.  This is probably the toughest bit, but it’s step by step.  Having the Salon/Spa is wonderful, as it’s made it clear to me what I’m really good at (and what brings out the worst in me).

People say I’m looking really well.  I do feel well and I feel hopeful.

 

Will It Work For You?

If you have Fibromyalgia or something similar and this is the first post of mine that you have read, make sure that you read this summary here.

The key to tackling this illness is to listen to yourself and your intuition.

You will have to tackle everything I have tackled.  BUT.  Take it one step at a time.  And bear in mind they might be slightly different steps.

Keep going for a while, even if you don’t get much improvement.  Remember the domino effect I described – sometimes it takes a while for your body to react.

So you will need to look at your nutrition, but might need a different diet to myself.  You might have a different primary cause of the Fibro (Fibro is always secondary to something else), so you might need different drugs/supplements to give you the initial relief.  You’ll definitely need to do exercise and I really recommend taking the Cherry Active; but maybe you need a different one, although I personally don’t think that anything extreme like running will ever work – you will just make things worse.  Sleep is a priority, but you might just stick to the Hemi-synch app.  You’ll definitely need to reduce your stress levels, but different people like different methods for doing this; for example CBT and Shamanic meditation have been great for me, others use the ‘spoon’ method of pacing (you have so many spoons to use up a day), others have deeper therapy work, there are all sorts of options.  Don’t forget your hormones as well – this is a much bigger effect on some people than others.

Be gentle on yourself – chronic pain is exhausting, depressing and frankly life often doesn’t seem worth it.  I feel lucky that I had 2 kids that gave me a reason to get up in the morning, otherwise frankly I wouldn’t have bothered.  If you don’t have kids, find a REASON, find something to motivate yourself.  There will be something.

If you are reading this for a friend, remember to be gentle with them – there will be big changes to be made in their lives and it can take a while to get their heads around it.

Decide that this is going to guide you to a healthier happier life.  And I’m sure it will.

Big gentle hugs to you all.

 

 

 

 

 

 

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