Dangers of positive thinking

My Progress: Fibromyalgia a couple of months on after diagnosis

Dangers of positive thinking
Good news, Bad news

 

I thought you might like to know how I’m doing with the whole fibromyalgia thing?

Lots of people have asked how I am, but it’s really difficult to say in 1 sentence, and I feel boring if I describe it in full.

I’ve learnt loads more about it and have created a static page which I’ll use to list the things I discover and all my posts about FMS.  Please pass it onto anyone you know with FMS, as it’s a tricky syndrome and it helps for us to connect with each other.

And I’ve definitely made progress, but also taken a few steps back as well.

It kind of depends on the day, I’m pretty much two different people at the moment:

 

 

Good Day Me:

Happy Mum
Happy Days when I can pick up my daughter

I’m up, and once I’ve had a shower I’m pretty perky.

Curly Headed Boy thinks that I look healthier and happier than I did before.

Life is much easier now I’m not trying to work as well as look after two young children, plus sort out my health and I know that I can pick up the paying side of my work again when Little Dimples does to school in 1.5yrs.

I’ve cut down my social media usage, and it’s really not so bad; I realise that there was panic about ‘always being around’, which was daft.

I’m just blogging about once a week, and my stats don’t seem to have gone down (stats are mega important to us bloggers).

I’ve started actually reading books again, which is lovely.

I’m getting time to make sure that the most important things are done (i.e. kids) which has reduced my stress levels loads, and I’m getting a chance to take some time out to think about those long questions like ‘who am I now’ etc.

I’m grateful I was diagnosed so early, so it hasn’t become too entrenched, and I’m sure that with some determination, lots of investigations and some trial and error I’m going to atleast manage it, if not sort it out totally.

My right arm doesn’t hurt any more, so just my left arm, back, neck, shoulders,  jaw, chest pain, left/right leg and both hips to solve; it’s a step in the right direction.  (I reckon this is down to the Amitriptyline).

The Dr increased the drugs, and am hoping that my left arm and chest pains will follow suit really soon, which would mean I can pick up the kids without pain.

My IBS is managed with greater strength Optibac probiotics and a nearly healthy lifestyle (IBS is a symptom of FMS and mine got worse when I became ill).

I’m really glad the surgeon decided that my TMJ (jaw pain on right hand side) wasn’t worth operating on and that a mouth guard wouldn’t work, plus the drugs have reduced the pain and clicking a lot and I can chew most things now.

The Fibro-fog has improved with a bigger better quality dose of Omega 3, 6 and 9 and I’m finding the alarms work well on the electronic calendar.  I have a snazzy small filofax so I can take my To do’s with me everywhere.

I feel stronger with the weekly studio (machine based) pilates classes and better quality vitamins (I wasn’t taking the full recommended dose).

Plus the Pilates guy does something called Osteolates (Mixture between osteopathy, pilates, and acupressure) which is fab for the myofacial pain (basically being in pain in the Fibro trigger points, sets the rest of the muscles off).

I’ve found the meditations using Shamanism (basically meditation to drum music) really helpful to reduce stress and worries and rediscover some of the ‘new age me’ that has taken a bit of a rest.

I think that my sleep is slightly better quality on the Amitriptyline (people with FMS don’t get any level 4 sleep) and I’m less affected by the full moon (I also have loads of ideas for sleep problems here if you suffer too).

The doctor agreed to checking my Vitamin D levels and as I was low (should be 75, was 42), they have given me a 2 month prescription of Vit D3 liquid gell capsules (best type); shame you can’t get a holiday in the Caribean on the NHS!

He also agreed to check my hormone levels as my periods were messing around a bit (very long) and it’s definitely not the perimenopause or PCOS causing the problem, so I don’t have to add anything else to the worry list.

I’ve found out that the FMS is due to the Thalamus gland, so the behavioural kinesiology (Resonance Repatterning) that I’ve been using to tackle the emotional/mental causes has been definitely aiming at the right direction, and I’m less confused by the huge number of symptoms to work through.  (The thalamus gland affects the pain signals in the body, so basically we feel more pain and there is more Substance P in our bodies than a normal person).

I’ve also found out that we produce more lactic acid more quickly than most people, so I’ve added Magnesium to my list of supplements in the morning and bottles of deep freeze to my bathroom cabinet for when it’s really bad; this is how come the amount of exercise we do is limited, as we can also injure ourselves more easily and take longer to heal.

I’m really ‘lucky’ that the Big Hairy Northern Ones contract was terminated early, as just by doing the majority of the school runs, I’ve been able to rest a bit more than I would usually have done which is helping me recover.

Ironically having young kids is helpful because the constant picking up of stuff and putting things back in the right place warms up my muscles and makes the rest of the day easier; the problem with Fibro is that you must move even though it hurts, otherwise it hurts more (you just can’t move too much, it’s a tricky balance).

I’m decluttering my house even more than I used to, as everything needs a place and the ‘system’ needs to work so easily that even the family understand it when I’m at my worst.  So things are looking pretty good around the house.  Give me 6 months and even my photos will be sorted; result!

I reckon I’m lucky that my diet was already pretty healthy, and I wasn’t using many products with chemicals in them due to my rosacea and probably only needs a little revamp and a good detox at some point, otherwise my symptoms would probably be worse (sugar, chemicals and preservatives are not FMS’s friend).

The Dr has referred me for some CBT (cognitive behavioural therapy) to help with pain management, and my first assessment was with a woman who has FMS, so she was great and reckoned that by teaching me some ‘pacing’, I’ll be able to avoid flares more easily.

I’m overwhelmed and enthusiastic about all the support and ideas I’ve been getting off so many people.

I’m sure that this journey will help me reinvent myself, and reach out to even more Mums with my books than before.

I’m at last remembering to take care of myself much more than I used to; I know I tell you lot to take care of yourselves, but I might not have done it enough myself, you know the old saying ‘Healer, heal thyself’.

I’ve got a plan and I’m working through it slowly, step by step, to a more balanced lifestyle and I’m trying to treat the Fibromyalgia as a guide, rather than an enemy.

 

 

Bad Day Me:

Exhausted Mums
Yukky

Christmas was awful for Fibro-flares, even though I tried to take it easy, get everything prepared beforehand and the Big Hairy Northern one always cooks Christmas dinner.  One flare was mainly just pain, but the other was a full on depressive yukky downer.

When I have a flare up God it hurts, apparently Fibro pain is worse than Rheumatoid arthritis (how they know I don’t know); it certainly doesn’t even notice ibuprofen.

My head is fuzzy, and I mourn the previously competent woman who could remember things and not rely totally on an electronic calendar with alarms.

I’m exhausted; I just want to hide under my duvet and not get up.

My hips burn and I wan’t to itch them, but then know I will get bruises the size of a dinner plate.

My knees hurt so bad when I’m getting up and down from the floor that I feel like an 80 year old and find it difficult to play with Little Dimples or use the washing machine and tumble dryer.

I’m meant to be eating healthy food, but that is stuff like nuts and whole foods, which hurt my  right jaw like hell to chew.

My eyes are really problematic in the mornings and evenings, which is helped by my new glasses, but worrying as it is probably related.

This and the fact that I’m sometimes a little unsure of my balance and spatial awareness and have to take my drugs early to avoid a hangover, makes night driving and going out socially impossible; I was never a big socialite, but it makes me feel left out.

I’m scared that I’ll get crippled with it and bed ridden like the people I read on the forums; in fact I’ve banned myself from reading them now as they terrify me with stories of stronger and stronger drugs that eventually don’t work.

I’m terrified of getting ill, because that will mean a flare up in the pain, plus the likelihood that the rest of the household will get ill and need taking care of, so I’ll get tired and get more pain.

Curly Headed Boy isn’t taking the added responsibility well, or the fact that I just don’t have the energy to ask FIVE times for something any more.

I’ve realised that although I wouldn’t change the fact that I was a ‘young carer’ it’s not the choice I would have made for my children, and I worry about the affect on them.

I was falling asleep with the children at least 50% of the time, but since doubling the drugs I hardly ever get back down again to see the Big Hairy Northern One; that can’t be good.

One of my friends dumped me the week after my diagnosis because I did something a bit flighty and very fibro.

I feel like a wimp when I keep having to explain that I can’t do something.

Then I feel angry because people haven’t taken the time to understand that I’m limited in what I can do because I ‘look OK’.

Plus sometimes I feel that people expect too much of me because I’m normally so sorted and know all this psychology stuff; I’m not allowed to be grouchy or grumpy or make a mistake.

I miss the freedom of running even though I was rubbish at it, because it was so easy to fit into life and helped me keep my weight in check.

The Pilates is boring, but I know it’s helping, so I keep going.  I’d prefer a dance class, but know it would kill me at the moment; even aqua aerobics crucified me for a week and I can’t go in a pool unless it’s warm enough.  (Hopefully I can add Tai Chi or Yoga soon)

I’ve put on a stone in weight, I’m not yet at an unhealthy weight, but I’m gutted after all that hard work before losing weight and worried whether I’ll be able to keep it in check with all my limitations.

I wish I had a Mum who could sweep down and pop me in a duvet, play with the kids for the day, whilst making a stew and tidying the house (my actual Mum wouldn’t have been able to do this bless her, even if she was still alive).

I’d like to cry most of the day, but have so far only broken down in front of Little Dimples once, who was so kind I was gobsmacked.

I don’t understand why it’s not possible to do a big declutter/tidy of the house AND walk the dog.

I used a pedometer to try and maintain a steady pace each day and find that whereas I used to be able to easily work up to 10,000 steps in a couple of weeks, my body is now crucified by Lactic Acid over 5000 tiny steps after a month of trying.

I’m irritated by people finishing my sentences for me as I desperately search for the words that have disappeared into the recesses of my head; audition and anaesthetic are not difficult words after all.

I don’t tweet, I don’t Facebook, I don’t phone, I just hibernate.

I’m scared of trying things incase it makes things worse, and depressed about a life limited and controlled by an illness.

My second assessment with the CBT people the doctor referred me to was with someone much less qualified, and I could have basically chewed them up and spat them out; God help them if that’s the kind of person they think can help me.  I think that my problem is that physical pain is so tangible, that I’m finding it much harder to deal with that emotional/mental pain.

I have no plan, I just hope that when I wake up tomorrow, this flare will be over and I’ll be back to ‘Good day me’.

 

 

They are quite contradictory people aren’t they?  They aren’t really agreeing with each other on much!

I reckon I’m just about more ‘Good Days’ than ‘Bad Days’, but only just.

Hopefully in my Spring/summer update it will be a different story.

Remember to pass my blog onto anyone you know with Fibromyalgia please (and if they are close to you, maybe read my FMS page and other posts so that you can understand them more too).

 

 

 

 

Back Pain

A Hidden Pain and Silent Fog: Fibromyalgia

Dangers of positive thinking
Good news, Bad news

 

I have some news.

It has good bits and not so good bits, but that’s life heh!

It explains why I’ve been a little quiet (but you may not have noticed).

It explains why I’ve been a bit flakey and unreliable (I hope you haven’t noticed).

It’s also about the next 6 months

 

 

 

 

What’s been going on?

I’ve been struggling with ‘back pain’ since January, which just seemed to get worse and worse.  I’ve tried a very experienced Osteopath and her Physiotherapist, then an Acupuncturist.

I also started looking at potential emotional stressors, as my opinion is that there is always an emotional/mental aspect to an illness, as well as a nutritional/environmental/genetic/physical reason (I’m going to someone who does a form of behavioural kinesiology that I used to be a practitioner of).

Back Pain
Photo from NHS website

But it got worse and worse, and then I realised that I had gone from just a general tired lethargy to being properly depressed, isolated, feeling hopeless and miserable, as the pain was excruciating.

So I went to the doctor.  It took me a while because of the receptionists and ridiculous booking policy.  But I got some anti-inflammatories, that helped to turn the pain levels down.

I was so frustrated with myself.  13 years ago when I had a lovely little Reiki practice, I used to be able to turn a bad back (one that needed surgery) around in under 3 months.  I couldn’t believe that I couldn’t fix myself.  Of course this didn’t help!

I was also beginning to worry that I didn’t have a bad back, because my Dad died after 6 months of a bad back from cancer.

Then I decided to try a Pilates studio who did a mixture of Pilates and Osteopathy called Osteolates, which at last seemed to make a dent in the pain.  After I had to go back to the doctor for more pills, the Pilates guy had a talk with me and told me to go back and get more help.

The doctor listened and then said ‘have you heard of Fibromyalgia?’.

And so it is a few weeks later after some tests that I now understand, not just why my back hurts, but also why my tummy has been worse and I needed the probiotics and why I’ve gone from being quite organised, to being so flakey that I can look at my diary and STILL double book something.

 

What’s Fibromalgia?

Fibro fog
Picture from Craig Martin Illustrations

It’s the nerves basically being over sensitive and feeling more pain.  They aren’t sure what causes it.

For me it is pains down both arms, hips, legs, across my shoulders, right hand side of my back, left hand side of my neck, sometimes head, right hand side of my jaw, and a feeling of something trapped behind my left hand shoulder.

It’s really bad in the morning, and I HAVE to have a warm shower to get moving.  It will ease off by mid-afternoon, but is awful in bed at night, so has disturbed my already disturbed sleep.

Others have it a loss less, and it’s more of a tingling or lack of sensation in hands and feet, which is scarily reminiscent of MS.

Some have it a lot more and can hardly work or move with it; I’m very lucky this is not me and I’m focussed on improving my symptoms, so that I don’t end up debilitated by it.  (It’s not however a degenerative or terminal illness luckily).

I also have had a return of my old IBS symptoms and worse sleep (they don’t know if sleep is the cause or bad sleep happens because of Fibromalgia).

Worst of all is the fibre-fog which had me forgetting 2 appointments with a health visitor, and Curly Headed Boy one day telling me off for being so disorganised.

At first I was a bit shell shocked as it seems a much more complicated thing to tackle than just a bad back.  I’m also not very keen on ‘labels’.  But now I’m getting my head around it, I think that Im much better off knowing, as I can now make some changes.  I’m really lucky my doctor was aware of it and open to it, because many aren’t.

 

So my plan?

Time to stop for a whileI’m backing off work big time for the next 6 months:

  • Paid blog posts are too much effort if you do them properly, they also add to the list of ‘To dos’.
  • I’m still on facebook and twitter; but I’ll be around a lot less
  • I have an existing client who I will continue to support as she doesn’t need weekly help, but I wont take any more on.
  • I won’t be publishing the second edition of my book or the paperback.
  • I won’t be finishing my new book ‘Lose Weight the healthy way without diets or bootcamps‘.
  • This also takes the pressure off finding a nursery for Little Dimples (which has been disastrous).

I’m going to play more with the kids and have tea with mates more.

I’ll keep blogging once or twice a week because I love it and doing my monthly Lifestyle feature for Radio Verulam.

The doctor has just started me on some pills to give me better sleep and help with the pain.  They are actually a mild-antidepressant when taken in bigger quantities, so I don’t think I want to stay on for too long.  But a break and a chance for my body to recover seems like a good idea.  Apparently it also confirms the diagnosis, if they work (which after one night I’m pretty sure they do).

The dentist has referred me to the hospital to see if they can help me with the jaw pain.  Apparently my teeth are wonderful, which must be down to the little water-spray gadget I got from Britmums live, as I’ve always been rubbish at flossing!

I’ve improved enough to start going to the Pilates classes at the studio (rather than 1to1’s), so I’ll stick with that to keep my spine moving and get my core stronger.  Non-pounding exercise is meant to help a lot, so I need to gradually add 3 more things per week.

I’m going to start ‘meditating‘ once a week, which is meant to be great for stress (which escalates the pain dramatically); but I’ve found a fun way, which I’ll tell you all about (it’s slightly wacky!).

I’m going to meet with a few other people who also have it to swap stories and ideas on how to tackle it.

I might look at hypnotherapy to improve my sleep as I had it once at 26 and it lasted brilliantly for 10yrs.  I know loads about sleep improvement, because I’ve had so little for so long, but it would be easier to just sleep!  We’ve also moved the beds around in the house and bought me a new bed to make it easier.

The doctor is going to put me down for some CBT (cognitive behavioural therapy) which is meant to help loads with dealing with the pain.

I have a huge belief in the power of nutrition, so at some point I’m going to have to face a big change in the way I eat; probably once some of the other bits and pieces are in place.  I have been a big fan of the Food hospital on channel 4 and they definitely had both eating plans for improving neurological issues and also inflammation (which are the main symptoms).

I’ll keep up with the kinesiology to dig up any emotional/mental aspects, which I suspect are from a long time ago.

 

Sooooo …

I’m sorry if I’ve not always been very ‘present’ recently; it’s been because of the pain that I got bored of mentioning and the fog that has clouded me from the world.

If you need me I’m always here at the end of my blog/facebook/twitter and I love to help, so it will ‘help me to help you’ (hows about coming over for a cuppa instead?).  So never feel bad about asking.  However, I’m not going to look for people to help.

If I don’t get involved with your event, charity, project or other thingy, it’s not because I don’t love you, it’s just that I’m taking some time out for me.

I was a bit embarrassed that I’ve gotten myself into such a state, but it’s daft to worry about that right?  At least some of you Mums out there will see what can happen when you keep trying to juggle all the balls, just because you’ve been able to in the past.

Luckily I never pretended I was perfect, and hopefully my blog posts about my improvement (the power of positive thinking and all that), will help other people.

If you know anyone with one of ‘those’ illnesses which are difficult to diagnose like Fibromalgia,  M.E. or CFS (chronic fatigue syndrome), then you might want to point them in this direction for a while.  I’d also love to hear of any blogs that you know.

Hopefully at the end of all this I’ll be a lot stronger and ready to take over the world with my books again!

 

Update: I’ve set up a page to record all the useful information and people that I find in my fibromyalgia journey.  I’d love to hear more from fellow sufferers either here or on that page.

 

 

 

Weight Loss Tips For Mums

Weight Loss Tips No9: Exercise

Ok, so if you haven’t added exercise into your weight loss regime yet, then now is definitely time for it.

But what I suggest might not be what you expect, bearing in mind I’m aiming for HEALTHY, FIT and SLIMMER (with a dash of sexier!), without bootcamps.

The thing is I’m over 40, the body is doing really well after 2 kids, but it isn’t quite what it was.

Plus I watched my mother spend the last 5yrs of her life in a wheel chair, not because of an accident or illness, but because she didn’t ‘use it‘, she ‘lost it‘.  You don’t want me to be explicit about how gruesome it can be when you are in a wheel chair and waiting for someone to come to your house to get you to the loo.

When you are 80/90/100 years old, do you know what is going to be your biggest fitness problem?  Running 10k?  No, it’s much more likely to be falling over because your posture is so bad you can only take tiny steps or your flexibility is rubbish.

So whatever exercise you do, PLEASE (I’m kind of passionate and shouty about this!) make sure that it includes core fitness and flexibility.  If you do nothing else, just pick something from one of these exercises.

  • Pilates
  • Yoga
  • Dancing (e.g. Zumba, Body Jam, Belly Dancing, Pole Dancing)
  • Swimming
  • Walking

Even better about all of these exercises is that they have a huge Mind/Body/Spirit kind of connection too, where you don’t just get to be fitter, but you also get a healthier mind and more balanced emotions.  You get an improvement with all exercise, but it’s greater with the ones that require some kind of co-ordination of the arms and legs, and that specifically affect your spirits or feeling about yourself.

Dancing is my personal favourite because it also adds in a bit of sparkle and feeling sexier, which is definitely a good thing for us Mums.  Plus, it’s an efficient use of time because you get more for your hour; exercise, lengthening of the muscles, flexibility, laughter (most of us being quite unco-ordinated), fun and a dash of sexiness.

You can measure your the number of steps you take a day if you get a pedometer (really cheap).  But did you know that you are aiming for 10,000 steps?  Yes that’s TEN THOUSAND, not one thousand!  That’s an eye opener isn’t it about what a recommended amount of exercise per day would be.

Don’t run if you are overweight, you are going to kill your body!  Walk fast instead and run later when you have lost some weight.  Plus, although it is a cheap sport, if you are older like me you really need to go to one of those shops that can see your running style and fit you with a good pair of shoes.  However, running is great and everyone can do it, you just start slowly and build up.  It can be really therapeutic to get some frustration out, plus it’s lovely to get fresh air and have some time to ourselves.

If you are a pear/curvy height challenged/short woman like me, be careful of exercises that will make you stockier.  In my experience I don’t need weights exercises for my legs or Body Pump or anything like that!  What you want is lengthening exercises like the ones I’ve already mentioned.  I promise you there was a time in my life when I was exercising like crazy and eating really well, but I was so stocky that I looked better when I stopped; how gutting was that!  Of course if you are a more of a skinny/boy shape, then these are the perfect exercises for you.

If you can afford at least to join a gym and get a plan written up that might be a good idea.  But remember to ask how long they have been working as a personal trainer.  If you have struggled for a few years with weight loss, then you don’t want the standard ‘I’ve been doing it for 3 yrs’ type of person and their standard fitness regime.

If you can’t afford the monthly bills for a gym, but could do a one-off, then many people are finding the Wii Fit and Xbox kinect very helpful.  For me the xbox wins, partially because it’s got Zumba and partially because I don’t have to worry about getting out the hand thingy’s, finding batteries because they’ve always run out and finding the plate thing to stand on (yes, I’m a bit lazy when it comes to extra faffing).

If you have a bit more money and fancy the most amazing holiday (and your kids are old enough to take or leave behind), then check out these Wild Fitness Holidays.  I did  their first ever trip years ago, and it was incredible.  I learnt tonnes, it was beautiful, and although I didn’t come back a size 10, I came back with the most amazing memories and the knowledge to sort a lot of my problems.  I can’t wait until they do a more child friendly version, I’d love to go back, even if I cant make it to Kenya, they now do a european version as well.

If it’s your tummy that is the problem (the muffin top, ugh!), especially one of those tummy’s that kind of fold over, then there are two easy things that you can do:

  1. Buy one of those fit balls, sit on it when watching TV or working.  Spend a couple of minutes a day balancing on it with your feet off the ground, and if you have a personal trainer get them to teach you how to do sit ups on them.  Two weeks of doing this on that holiday I mentioned and the difference was tremendous.
  2. Get a piece of string, stand up straight and tie it around your waist.  Now whenever you let your posture go as the day progresses, you’ll feel the string and remember to breathe in.  Cheap and effective!

Lastly remember with all exercise to warm up, cool down and stretch afterwards.  It doesn’t need to take ages, but it is really important.  Without it you can damage yourself and then stop your weight loss for weeks.  Even worse is you could seriously damage yourself and end up putting weight on.  Remember to take days off, so that your muscles get time to rest.

If you have problems with motivating yourself, then make sure you don’t force yourself to do something that doesn’t really suit you, instead take into account your personality.  Are you a loner (needing time to yourself; go for a walk/run/swim)?  Are you sociable (go for a class)?  Do you miss your clubbing days (find a dance class)?  Are you more of a Zen type of person (try yoga, pilates or walking)?  You can always go back to the 15 minute ‘how to get your head in the game‘ video to give yourself a boost.

p.s. I’ve nagged you about hydration before, but please make sure you drink water while you exercise.

 

Update: since writing this post I’ve created a whole blog series about exercise which is worth you checking out.

 

Update: since writing this post I’ve been diagnosed with Fibromyalgia.  From what I’ve now learnt about my body I know now that this post is even more right that I thought it was.  Take care of yourself and your body, it’s important.  Don’t beat up your body, you will need it for a long time!

If you find these tips helpful, feel free to sign up for my RSS feed or get my posts by email so that you don’t miss any, tell your mates, and join my facebook fan page.