Going out when you have Fibromyalgia

Oki, so today was a really big day for me. It has been exactly a year since I last went out. The main reason, is not being well enough to go out and going through many, many tests and medication combinations just to get to the point where I am at now.  I have previously written that my med combination keeps my pain levels at around a 6 or 7 out of 10, on a flare, about 8 or 9, but the point to remember , is that it is the best combination so far despite not being totally effective.

Trying to cope with a full time job when you have FM is a big deal, and because it takes up so much of your already limited stores of strength and energy, when it comes to the hallowed weekend, there is nothing left. Therefore, to go out, for me, is an epic task.

It has been 2 months since I moved, and the journey to my preferred watering hole was easier than it had ever been as I just had to hop on a train, although the hill to get to it is practically vertical and very hard work even if you are fit and healthy! So, the strength and energy that I saved on the journey, was wiped out walking up the hill..double edged sword.

 

Anyhoo, the important thing to remember, is that I had not rushed to go out. I took my time to get ready, and chose to go out in the late afternoon as opposed to the evening. I took the minimum dose of my meds and wrapped up my worst joints. I prepared myself to go out for as long as I could and push myself as far as I could.

 

Hands up, I had a couple of alcoholic drinks which is very very bad when you are on medication. Not a good idea at all, but I stopped after 2 and went on to soft drinks.

 

I was quite proud that I lasted from half two til four managing the pain, but I started flaring and my heart sank.  I carried on for a couple of hours, just on soft drinks and going back to taking my meds at the right time, with one more tablet than the minimum (I did not want to take the maximum as I had had a drink). I admitted defeat at half past seven as I just could not manage the pain any more and needed to get home.

Another difficulty,  were the noise levels.  If you know anything about FM, you will know that being a neurological disorder, everything you sense, light, sound, smell, touch, pain  is magnified tenfold. If you hear a raised voice, my ears will hear a rattling bellow that will make me feel physically sick and send shockwaves through my body. So, to say that a large drunken fancy-dress party walked into the bar, it was a sensory overload that I just couldn’t cope with.

The worst thing for me, is that I went out to see friends that I had not seen in a year, and on top of this, a few more friends walked in just as I was leaving. It is so frustrating that I cannot endure the sessions I used to have, and when I arrange to meet people, I do feel as if I am letting them down when I have to go early, or that I cannot join in the drinking and subsequent “merriment” (pronounced drunkenness lol) that I used to adore.  It breaks my heart to have to tell my friends that I am going the minute they walk in when all I want to do is catch up and enjoy their company

On the one hand, I am proud of what I have achieved today by being determined to go out and make the effort to see my friends, however, on the other, I am melancholy that it has reminded me of the changes that I have to make. Baby steps on this one I think, but it was a start. Watch this space

 

 

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Some tips for when Fibromyalgia flares

Hola,

I have had a really rough weekend this weekend whereby the FM has decided it was going to have a rave in my body and everybody was invited. It seems the requirement was that they were wearing stiletto’s and clogs and were prepared to stomp their way around my joints and limbs for the last 2 days…

This made me think, what do I do to get through it when it is really bad and I am in so much pain, I cannot even communicate. These tips may not help for others, as we all experience pain differently, but it works for me. No, it will not take the pain away, but it helps me cope.

  • Take your meds regularly so that you have a constant routine. I have found that when I miss my meds, my flares are a lot worse.
  • I have a big problem with polymyalgia and polyarthralgia, which affects all of my joints as well as my muscles. On a day to day basis, I wear Imak arthritis gloves to give my hands warmth and support while I am typing. I also wear angora joint warmers on my wrists which can be pulled up to my elbows if necessary. In short, if you have an area which hurts more than others, take precautions to keep that area as comfortable as possible.
  • Fabric softener. Sounds a bit odd, but fabric softener is essential for me as if I make my clothes, gloves, joint warmers, bedding etc as soft as possible, it assists in the perception of cocooning yourself in comfort. I find it very soothing, a barrier if you will when so much pain is being emanated from inside my bones.
  • Duvet and pillows. When I am really bad, and I cannot sit up, I have a method of making a nest from my duvet and pillows. I make the duvet into a sausage shape in order to lay on my side and support the upper leg whilst providing a barrier so that my knees are not pressed together, the same goes for my arms. I set up my pillows so that my neck and head are well supported and I also lay pillows behind me to support my back. The combination of duvet and pillows not only provides support, but also warmth. I have a light blanket which I lay over the top of me if necessary when in this postion.
  • If I am at the state of needing to lay down, I also need to darken the room and keep noise to a minimum, which isn’t great if you have a partner who wants to watch tv! I was lucky enough in that the wookie bought me a sleeping mask and that providing the tv is low (and he uses subtitles anyway as he has bad hearing) we can still be in the same room despite my having a big old flare. The mask is great to relax you down as it gives the perception that it is the middle of the night. Also, mine is very soft on the inside and this is very soothing on my eyes and temples
So these are just a few tips that work for me and no doubt, I will add some more as time goes by 🙂
All good karma x

Fibromyalgia Awareness Day – May 12th 2011

Hola,

Here it is, a day where I can try and push awareness of FM, not just for me, but for some dear friends who also have the condition and those the world over with it.

We don’t want your money, we don’t want pity, we don’t want assumptions about us, we just want UNDERSTANDING.

We are not lazy, we are not work-shy, we are not hypochondriacs. I work a 60 hour week, I force myself to get through every day and I try, try, try to do anything to treat this condition.

Do you know how it feels to try and maintain a positive attitude every day, despite being wracked with unrelenting pain in every part of your body? Do you know how it feels to really look forward to having a day out, just one for the first time in a year, and you can’t because you are having a flare-up and not only are you in incessant pain, but your body feels like every last iota of energy has been drained from it?

Despite the FM, the polyarthralgia and polymyalgia, I don’t want to be pitied, I don’t want to give up work and I don’t want people to not know how to talk to me or unable to understand how to interact with me. All I want, is just basic understanding and consideration, just like I give to everybody else. Here is a link to a previous blog which has an easy to understand letter describing what it is like to have fm without all the jargonese;

https://inkipixie.wordpress.com/2011/03/19/this-is-what-it-is-like-to-have-fibromyalgia/

If you would like to find out more, please have a look at the links below. If you want to pass them on, thank you, it would help a lot;

http://www.fibromyalgia-associationuk.org/

http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Introduction.aspx

http://www.cks.nhs.uk/patient_information_leaflet/Fibromyalgia

http://www.facebook.com/event.php?eid=141559805915749

You don’t have to read all of the links, but if you could read just one, it would be very much appreciated.

Have a beautiful day xxxx