Trying to have a life and fibromyalgia gets in the way, sometimes

So I’m due at a 3 day festival this weekend.  I have a nice warm comfy camper to sleep in but the constant rain does cause havoc on my already fragile spine and fibromyalgia.  Last year was torrential rain and flooding for the whole weekend.  At this moment I don’t want to go I am so fatigued I hurt all over, even blinking hurts and writing this on my phone hurts.  I have 0 energy and today I spent my lunch break laid in the back of my camper in the car park at work just with my eyes closed resting.


The fatigue is crippling.  The constant rain is making my nervous system very over sensitive and I just want to curl up in bed for a couple of days.

I went to a gig at the weekend and I was having a great time watching a band I bought my husband tickets for last Christmas but I was overconfident and drank more than my upper limit of 3 beers and the 7 hour round trip has given me crippling fatigue, muscle and body aches and an awful headache.  I cannot make conversation and nothing is easing the pain.  It always takes 2 days to kick in.

I have to go to London for 2 days for work tomorrow and quite frankly I’m dreading it as I’m already feeling like I have the flu, I don’t it’s a flare up.

I need to focus my mind, think positive, it will pass.  I know I can do the festival I just need to do it on my terms.  Thankfully we have a couple of friends coming with us to keep my husband entertained so I can have plenty of rest.

No one knows how fatigue feels with fibro it’s like just starting off with flu and having the worst hangover ever and you also fell downstairs the day before so you feel bruised all over and it hurts to touch skin, I reckon that sums it up.  

It takes an hour to get in the bath that someone else to run for you then you have to rest after you’ve had a bath as your energy has gone ūüėā

So I’m going to get straight into bed and do some mindfulness and get focused.  Mind over matter.  I can get through London think of it as a mini break and the festival a holiday!! 

I can then moan some more next week and feel sorry for myself even more!

Post Christmas Fibro Flare

I really don’t feel as bad as I expected to feel.  Obviously I’m not feeling like I could cope with a full day of ‘doing stuff’ either!!

Yes I am chronically exhausted and need to rest, my sleep is not great and my head doesn’t feel like it belongs to me.  I can’t control my body temperature and my IBS is terrible.  But I still don’t feel as ill as I thought I would.

I mean let’s be honest Christmas can be a nightmare for those of us with a chronic condition.  Overeating ‘bad’ food, drinking alcohol, having to go out and travel and spend days at a time at social events which all impact negatively on our nervous systems.  I mean the worse people get over Christmas is a hangover and maybe a couple of pounds of extra weight whereas someone with fibromyalgia we can end up with the mother of all flare ups, not being able to get dressed, go out or even cook for ourselves.  The intense nerve pain, digestive issues, depression, skin itching, insomnia, stiffness, headaches etc etc, the list goes on and can be so debilitating it can ensure we housebound for days, sometimes weeks.

It’s important to reflect on this; there is a reason why we feel like this:-

  • We have no paced our activities and just dived in head first, not wanting to let people down.
  • We have drank alcohol which is a very bad idea with this condition
  • We have not ate healthily (a Christmas dinner or 3 is not all healthy!)
  • We stayed up later and get up later which ruins our sleep routine
  • We have watched much more tv and used our phones more which has disrupted our production of the sleep chemical melatonin
  • We have travelled much more than normal which exhausts our bodies
  • Social occasions tire us out too!

It’s important to acknowledge why we are having a flare and then get back on our plan.  By now you should have worked out what that is right?

Ditch the non healthy food and treats, stop drinking booze, rest, go to bed and get up at your planned times, pop on those uv glasses once it gets dark and don’t forget your vitamins, 2-3 litres of water a day, meditate and exercise daily, you will soon recover and feel more like you.

I think the reason I don’t feel as bad as I thought I would and the flare is not as bad as I’ve had in the past is that my head is in a good place and I know this won’t last .  I’m enjoying the opportunity to rest, watch some films and eat healthy nutritious food whilst smiling about the best Christmas I’ve had since getting seriously ill 4 years ago.

Happy new year everyone 

The silly season and Fibromyalgia 

I wanted to share some of my tips for surviving Christmas with this condition.  In the sat I’ll be honest I’ve been a right miserable sod as I focused on what I couldn’t do not on what I could do or asked for help!!

If you choose to drink alcohol then don’t expect to have a healthy Christmas, I am going to be brutally honest, alcohol and fibro go together like chalk and cheese.  It’s seriously bad for you, your mind and your body, your already oversensitive nervous  system will make you pay, here’s what happens to me:-

  • Palpitations
  • Overheat or am freezing
  • Numbness in parts of my body
  • Pins and needles
  • Panic attacks
  • Confusion
  • Insomnia
  • Diarrhoea 
  • Indigestion
  • Pain under arms and on my upper stomach when touched 
  • Depression
  • Anxiety

I am sure they are more!!  I used to be able to drink shandy but in the past month I cannot.  It’s your choice but ask yourself why you do it if it makes you feel ill?  Peer pressure, don’t want to look a party pooper?  Personally I’d rather feel healthy.  Do your research on google 

Okay let’s go onto the second thing that affects fibromyalgia; food.  Many of you might not have made that connection but I have my keeping detailed food diarys, food affects our nervous systems in more extreme ways than a person without this condition as we have sensitive nervous systems.  Not only does it affect my nervous system but I now have an inflamed bowel that I am having an exploratory operation for next week, it really is not worth eating shit food or drinks!  Okay here’s some of the food that affects me in a negative way and I’ll give you a few symptoms of what it does to me:-

  • Red meat
  • Cows milk
  • Alcohol
  • Coffee
  • Sugar
  • Anything containing sugar; cereals, dessert, chocolate etc
  • Cheap takeaways, fast food such as McDonalds, KFC and Chinese takeaways
  • Too much chilli ūüĆ∂ 
  • Fizzy drinks
  • White rice 
  • Pasta
  • White processed bread
  • Processed, packaged cheap food that contains chemicals
  • MSG (found in many foods; Chinese chemical that enhances the taste buds in humans)
  • Too much cheese

I am sure there is more!!

I am not a saint, I’ve slipped up this Christmas, wanting to join in with my colleagues and friends at work, who have been absolute stars ‚≠źÔłŹ I’ve eaten canteen Xmas dinner, been out for s meal and ate red meat and had 2 shandys on two occasions and boy have I been ill, not just with fibromyalgia but also my inflamed bowel has not reacted well to the ‘crap’ food.

I’ve had to take 2 tramadol each morning and I have gone hit more than 3 days and I’m afraid that my body is now needing it to feel normal.  It just goes to show how dependant our bodies get with these pills, the pain from fibromyalgia is extreme, I know that.  But I need to get my nutrition back on track and wean back off these stupid tablets.  One thing I won’t do no matter how ill I feel I will not take more than 2 a day!!

Do not let your condition get you down, it can be controlled, you have to stick with the plan!

Chronic fatigue and feeling angry

I average around 4 hours sleep every night which when I get in the number 5 is a cause for celebration in this house ūüíź. I have a pretty good routine:-

  • A hot bath with magnesium flakes and organic bubbles
  • No tv for a minimum of 1 hour before bed.
  • If I use my phone to update my Facebook page and blog I wear my uv glasses.
  • I only have one coffee before 7am
  • I don’t drink alcohol
  • I keep my room well ventilated with a temperature of around 19 degrees
  • My curtains are black and my walls painted dark
  • I wear ear plugs so no noise can wake me up
  • I sleep naked so I am not restricted by clothes
  • I never eat at least 2 hours before bed
  • I mindfully meditate daily before bed and every other day I undertake mindfulness yoga 
  • I have a lavender plant in my bedroom and place some fresh inside my pillow each night
  • I don’t drink water too close to bed so as not to wake in the night for the bathroom 
  • I have no switched on electrical items in the bedroom

I think that I have a pretty strict routine before bed and I really do feel that this has helped me wake up over the past 3 months feeling more refreshed than I have done in the previous 2 years.  But when it gets to about the 5th day of only have 3-4 hours sleep 15-20 hours in total over a working week I start to lose the will to live.  I cannot concentrate, I’m tired, have no energy, my cognitive behaviour starts to suffer.  I hate everyone and everything.  The fake smiles I have to put on at work, people asking me if I’m ok and I nod and say yeah I’m great (when all I want to do is shout out loud NO I AM FUCKING NOT!).

I do know that if I could ramp up my exercise and tire myself out more I’d sleep better, but how can I do that when I exercise then I literally struggle to go to work.  Pacing ah yes good old pacing.  I’m logging down what I do, how I feel etc but each day is different from the next which makes things a little difficult to track.  Some days I can sit for hours others minutes before I get pain.

I feel like I’m having some sort of mental crash, possibly from coming off citalopram and Amitryptyline?  Delayed reaction?  I’ve been off them 2 weeks.

Does anyone know of how I can get more sleep without resorting to regular medications?  Am I missing some vital information?