Fibromyalgia & My Fight With Food

Hi there my lovelies,

I trust that you are all well – or as well as can be.  I was thinking over the last few days about how much my life has changed because of Fibromyalgia.  I always expected to be working full-time, while trying to schedule my holiday time with my husband.  It’s not that I dreamed of working as an office administrator, but I just always thought I would be working.

As a kid, I never really got sick a lot.  I mean, when I DID get sick it was usually something dramatic like an infection that had me in hospital for a week with an IV in my arm.  Other than the occasional cold or chicken pox as a kid, I was pretty healthy.

 

I think that sometimes the universe has a very twisted sense of humour.  I spent the majority of my life struggling with an eating disorder (Bulimia) and low self-esteem.  I would starve myself or make myself sick and exercise like mad and I was usually only left feeling sick and tired.  When I injured my back I had to stop going to the gym and stop the power walking I was doing.  My first thought wasn’t “I hope I can get back to normal” it was “I hope I don’t get fat.”  When a few pounds started to creep on because I had to stop my exercise routine, I had a massive panic attack. It got even worse when I was put on Gabapentin because the weight piled on and hung onto me for dear life. (20 pounds to be exact). On top of the Fibromyalgia pain all over, my prolapsed disc in my lower spine is still prolapsed.  This means working out in the gym or pool is off limits because I can’t do the movements needed without making things worse.

I have changed my eating habits to healthier ones and I eat lots of fruit and vegetables and also fish and chicken.  I was even vegetarian for 8 months and while my cholesterol is probably very happy, I just couldn’t face another Quorn mince lasagna.

I have found it very challenging to eat healthy at times.  It’s not because I don’t want to eat healthy, but between my Fibromyalgia, my arthritis, my IBS and my irritable bladder, there are so many foods that I have to avoid.  I often feel like there is literally nothing left to eat.

I have to avoid pulses, legumes, insoluble fiber (spinach), spicy and greasy food, mushrooms, cabbage, broccoli and any foods that create gas.  I have to avoid soy and tofu and edamame because they cause problems for my Thyroid and that causes issues for my Fibromyalgia.  Ginger is supposed to be good for my arthritis but it irritates my bladder and bowel.

It took a back injury – which caused my Fibromyalgia to flare up – to force me to deal with my eating disorder.  I was forced to face it head on.  Trust me when I say that it has not been easy and it still isn’t easy.  I am at a healthier weight now but it is hard because I have significantly reduced mobility.

I know that there are a lot of us who struggle with depression or anxiety because the drugs we are on lead to weight gain.  I still struggle.  I am finding it easier to face my demons and get on with life.  I know that I am not the only one and that nobody really talks about this.  I want to share that we are all beautiful.  It doesn’t matter what we look like now or what we looked like before Fibromyalgia trampled our lives.  We are all beautiful.

I’m working every day to not feel guilty that I can’t go to the gym or pool any longer.  Some days it works and other days it doesn’t.  I hope that you will all remember that it’s okay if you can’t work out.  If you have managed to get out of bed then that is a victory right there.  If you are able to shower and get dressed – wow!  You are awesome!  Unless your GP says that you must lose some weight and then makes a plan with you, DON’T WORRY ABOUT IT – you are too busy trying to keep your body from destroying itself.  Feel free to say that to anyone else who suggests you should diet.

I love you guys and all the support you give me, let’s fight the good fight.

butterfly

 

Advertisements

Looking for Long-Term Pain Relief is Like Looking for a Unicorn

Hello my lovelies, I hope you are all as well as possible.

I know that Cannabis Oil is going to be allowed in the UK sometime in the future.  It will be for “extreme” cases of pain management and only certain doctors will be permitted to prescribe it.  I am grateful that those two boys will be able to get it to help with their conditions.

billy

I have to wonder though, why is there such a hold up for the rest of us who may not have acute pain, but deal with horrible and long-term chronic pain?

 

When I read in the news that the Cannabis Oil was going to be allowed, I got so excited!  I have really painful osteoarthritis in all my joints, pain from my prolapsed (bulged out) disc in my lower spine AND of course all the pain that comes with Fibromyalgia.  I had a moment of hope.  I did a little mental dance of happiness, because I – like all of you – would have an option that wouldn’t affect us like the medications we might be on.

cannabis oil

I was excited until I read the fine print.  Only certain doctors – read: in London and private care only – would be given special licenses.  Only “extreme” cases would be considered.  “Extreme” by who’s standard?  I mean, on a scale of 1 to 10 I am at a 9 on a rare good day and 12 on most days.  I can only get out if someone pushes me in my wheelchair and I have to use my crutch to walk 10 feet from my bed to the toilet.

I have a domiciliary carer come every Monday to Friday to help me shower and get dressed because of the pain I am in.  I feel lucky that I am not paralyzed or dealing with seizures of any kind.  I have learned the fine art of putting on a happy face because I don’t want to depress my family with the pain I am in – there isn’t anything that they can do.

The hope that I had was quickly dashed.  It would be like thinking you just saw a unicorn, only to realize that it was a regular horse with flowers on it for a parade or show.

horse

I think that the hardest part of chronic pain or any chronic illness is that you keep hoping you will find that magic pain relief,  The combination of Co-codomal, Sertraline and Gabapentin barely take the edge off.  My GP refuses to move me to morphine and so that leaves me at a bit of a junction.

I have found that pain-relief gels are no help, nor are compression gloves or leggings. I have found that hot and cold gels are also no good.  Magnetic bracelets have only a limited affect, so what now?  Do I hope that the Cannabis Oil will become much more available for those of us suffering from chronic pain?  Do I hope that maybe my new GP will put me on opioids?  Do I keep looking for that mystical unicorn or just accept that the creature I see is just a horse?

unicornhorse

Thank you for reading my lovelies – let’s contiune to fight the good fight

butterfly

Fibromyalgia- “Is That Some Sort of Weird Rash?”

Hello there lovelies! I hope that the break in the heat has brought you all some relief.

I think I have just about recovered from our weekend in Bristol.

We all know what Fibromyalgia is NOW, after living with it for a time. When I try to explain it I still don’t know how to give it it a simple explanation that makes sense.

I have told people that it’s an autoimmune disease where my pain receptors are constantly on overdrive so that everything hurts ALL THE TIME.

I have had to accept that there isn’t really a way to explain Fibromyalgia with a short description and have it be accurate at all. Here is my more detailed explanation. I might have to just print out multiple copies and hand them out like leaflets for anyone who wants to know. Feel free to do the same.

F – foggy brain

foggy

 

I – Insecurity

insecure

 

B – Back aches & Pain

traction

 

R – Rheumatic-like pains in the joints

arthritis

 

O – Osteoarthritis may show up

M – Migraines or Headaches

headache

 

Y – Yuckiness you feel in your tummy

spongebob

 

A – Aches and Pains in your abdomen

stomach

 

L – Losing interest in daily activities

bored

 

G – Grin and Bear it – a new skill you learn

fine

 

I – Incontinence

pee

 

A – Autoimmune conditions may join the fun

party

Take care my lovelies, and continue to fight the good fight.

butterfly

 

 

Fibromyalgia – Learning How To Take a Modified Holiday

Hello lovelies, I hope you are all doing ok and are enjoying a bit of a break in the hot weather.

My husband realised yesterday that he had saved enough hotel points from all of his travelling for work that he earned two free nights – including breakfast- at one of the many Holiday Inns. We all decided to stay at the one in Swindon. We planned to spend most of today in Bristol and then we are going to the retail outlet mall in Swindon tomorrow, before we drive back home to Colchester.

The weather has been crazy. From heavy showers that lasted 10 minutes to sunny and windy.

It is so cool here! I made sure to get pictures of Wallace and Grommet as well.

Steve has dropped the kids and I off at Flip Out, a trampoline play area. I am set up near the cafe and I can watch the kids from here. This place is really cool.

We are all going for dinner in Bristol tonight.

Even though I have to be pushed in my wheelchair or use my crutch it’s still a great mini break.

I am still in HORRIBLE pain but I am trying to block it out so I can enjoy this time together.

I KNOW that I will pay for this tomorrow and probably even tonight, but I would rather have this pain and spend this time with my family over the weekend than not.

Sometimes I have to force myself through the pain because I don’t want to miss out on any more of my life.

To all my fellow Fibro Warriors, let’s keep fighting the good fight!

Fibromyalgia Pain – “Would You Rather?…”

Hello my fibro Lovelies!

I don’t know if any of you have ever seen the film “Would You Rather?” from 2012 or not.  For those of you who haven’t the premise is this:

would your rather

Seven people are invited to a wealthy man’s home with the promise of a large sum of money that they all either need or want.  It’s not until after they are sitting down to eat that they all realize the rich man is actually sadistic and he and his son love to watch what they can make people do for money.  For example, there is a point when someone is asked if they would rather wear a special device on their head and be electrocuted themselves OR have the person beside them wear the cap while they push the button to electrocute them.  As you can imagine, it gets much worse from there.

I often feel that having Fibromyalgia and an injured lumbar disc is a bit like a less gory version of “Would You Rather?”  For example, would I rather insist on getting my GP to put me on morphine to help manage the pain better OR would I rather be in chronic pain but not be horribly constipated?

morphine

Would I rather be more comfortable at night OR would I rather be more comfortable during the day and hope for the best at bed time?sleeping beautyrelaxing

 

Would I rather play it safe with the giant incontinence pads I use OR would I rather find something smaller and hope I don’t have any emergencies?

peeneed to pee

 

Would I rather sit outside and enjoy the sunshine and risk a reaction  because of my medications OR would I rather stay indoors and look like Casper the Friendly Ghost?

Caspersunburn

 

What about you my lovelies?  What sort of terrible choices would you rather make?

My dear Fibro Warriors, let’s continue to fight the good fight!

butterfly

Fibromyalgia & The Art of Procrastination

Hello my lovelies, hot enough for you?  Ha ha ha!

sylvester

 

I hope you are doing as well as possible in this heat.  I refuse to complain because I know that it won’t last forever, but it is definitely the hottest summer that I can recall.  The weather forecast for next week is that it is going to be hotter than Jamaica – nope, not kidding.

Does this mean that restaurants will start offering Pina Coladas with Rum or Jerk Chicken with their Full English Breakfast?  hmmmm – not necessarily a bad idea.

Okay, I confess.  I was in too much pain the last few days and then when I started to feel better, I was content being a couch potato to actually write anything.  That is probably one of the most frustrating things about this condition – or any chronic condition actually.  It always seems to be that when I am inspired or I have some great ideas for this post or things I want to do, I am in too much pain to do them.  When the pain subsides, I can’t be asked.  It is a perfect storm of procrastination.

Today I feel very lucky my lovelies because my pain has eased off a bit and I felt in the mood to share with you all.  I had my son take me to the hair salon yesterday and had it cut and styled as it was desperately needed.  That was one thing I simply couldn’t procrastinate over any longer.

Meg new do.jpg

 

How are you all doing?  How are you trying to cope with this heat?  If you have any suggestions, please let me know.

Let’s keep fighting the good fight my fellow Fibro Warriors

butterfly

 

 

 

 

 

 

 

Fibro Warriors Are Like the Marshmallows in ‘Smores –

Hello Lovelies,

I am writing this right now and I don’t know exactly what to say.  My head feels like it way too heavy and large for my body.  My jaw is stiff on both sides of my face and my throat hurts when I swallow.

marshmallow

 

I feel restless and bored and like I want to cry, for no particular reason.  I don’t want to be someone who seems to only whine, but every now and then it feels good.  So, apologies, but I feel like crap and everything hurts, but more than anything I need the virtual contact from all of you.  It doesn’t matter to me if you like my posts or comment on them or even if you forward them on to others, it is that little bit of human contact that makes everything much easier to deal with.  Okay, it would be nice if you liked my posts and passed them along, but it’s okay if you don’t.

It’s impossible to get out of the house with Carl (my crutch) or Wally (my wheelchair) and when I am in a low place sometimes it is the exact thing that I need.

 

Knowing that I am not alone in my suffering or my challenges helps me to get on through my day.  You lovelies all help me to carry on and to want to write and share what’s going on in my life.

You guys are like the marshmallows in my ‘Smores – sweet and delicious and the key ingredient for the ‘Smores to be more than chocolate-covered biscuits.

smores

 

We are all more than just our conditions my lovelies.

My love goes out to all of you – whether you are having a better day, a good day, a bad day or a really crap day.

Thanks my fellow Fibro Warriors, you give me the strength to fight the good fight.

butterfly