FM and acupuncture?

Hola,

Well, another docs appointment yesterday and my lovely doc has referred me for acupuncture. I have seen various people talk about it on the FMA UK forums and now I will be trying it myself. (Please note that URL’s not in bold need to be copied and pasted into a new browser page)

My dad has had a ton of acupuncture for his neck and back (a lifetime in the army made it necessary) and he swears by it. Apparently it is a rough start but effective over time

The only worry I have, is how it will manage the huge array of pain sources? I want to be positive about it, but I imagine that the acupuncture would have to be focussed on the spinal cord in order to disrupt the pain signals being transmitted from all the different pain locales to the brain? Also, I am intrigued as to just how many of the copious FM symptoms it would be effective on.

It would be interesting to see if the acupuncture would assist with energy levels as one of the most frustrating aspects of FM is when all of your energy is sucked out of you almost instantaneously. (Not fun when you are at work or having your first visit to the pub for a year *humphf* )

So on to research.

Not at all enthused by this abstract from Oxford Journals. Annoyed at this study from Washington in 2005 which insinuates that the treatment was purely psychosomatic which subsequently infers that FM is a psychological condition and not as it actually is, a neurological one: http://www.fibromynet.nl/pdf/acupunctuur-Washington.pdf The title itself encourages me to hold the paper in contempt. THe title would appear more professional if it would acknowledge the administration of non-effective acupuncture ie a placebo (Phlllrrrbbbt). Perspective is required in that at the time of this study, FM had only been identified for approximately 5 years.

Very interested in the following article which attempts to ofer a logical explanation and validation of the treatment: http://chronicfatigue.about.com/od/alternativetreatments/a/acupuncture.html (Whilst it is not in the form of research, it is a nice overview)

Another abstract indicates that whilst acupuncture is effective in pain relief, it unfortunately does not alleviate the chronic fatigue or other symptoms of FM: http://www.ncbi.nlm.nih.gov/pubmed/20100789

So,if I am to rely on a small selection of published media, I would assume that acupuncture s a viable treatment for pain relief. In addition, the opinions of friends and family would lead me to believe that it is also a good treatment for pain in the bones and joints. However, as with anything, I am going to try it for myself and see where it takes me. ūüôā

Concept: Karmabliss

I have decided that I will add a new branch to my karmatillery, and that is to add the concept of karmabliss.

The way I see it, karma is an integral part of life. True, it may take it’s sweet time coming around, but is it because we are waiting for something in particular to “just happen” or are we just missing what can be considered a little piece of karma?

Don’t get me wrong. I believe that if you want something, you have to work for it, end of. ¬†However, if you have a life of significant challenges, it helps to have some level of a belief system. I don’t subscribe to a religion, in fact I have developed my own belief system from a wide range of beliefs and philosophy, but the key point here, is that when it is all a bit dark, and life has beat you upside the chops with a sock full of pool balls, it is reassuring to think that what goes around, comes around

I don’t do nice things to get things back, not at all. I am also the first person to say that there is no such thing as “true altruism” as there is always a level of delight to be obtained from making your workmates a cake “just because” or sending a text to a friend to say you are thinking of them, but there are many people who do not go to that level for others?

Anyhoo, I digress. I have been through the mill in the past two years, and in fact, I have probably had more “challenges” in my life than most (to the level where the Wookie is adamant that I was the head puppy/baby/kittenkiller in a past life…seriously, my luck is THAT bad and I have been through THAT much) . I was beginning to consider that karma might reward me with, I don’t know, a lottery win, or a miracle cure for what I have…and I was getting really quite frustrated about it….you know the type of whine “I am a good person, I try, why is it I always get the short end of the stick????” yada yada yada. ¬†Now that sort of behaviour doesn’t get any of us ANYWHERE. *pondering why my netbook return key has packed in right at this very moment when writing about karma????*……….*toddle over to desktop PC*

Hmmmmmmm…that was odd. Anyway, I have established that although unavoidable, feeling a bit sorry for myself when I am in the wars and run down¬† is not going to achieve anything and will just kick off a downward spiral that I want to avoid at any opportunity. Therefore, today I considered the concept of those little things which really…REALLY…do matter whilst you wouldn’t think they were a karmariffic reward. So, is it denial of reality?

Not in the slightest. It is enriching. You notice more around you, you experience more..it is almost a hightened sense of awareness. EG. Going back to the last two years…it’s all been a bit pap in all honesty, and at times, I have been utterly defeated by it all. I really do not like having to live where I do, and it was something completely out of my control. However, the karmabliss out of that negativity, was fluttering about in my back yard today, ripping out weeds, tidying up the plants and sitting out as the rain started, just being happy at what I had achieved. Some people would say “you have only done a bit of gardening” and that misses the point of karma. I was ABLE to do the gardening. I saw bees and ladybirds all ower. I felt ACCOMPLISHED. The tiny bit of garden I have looks delightful. The rain was light and warm. See, little reward there that I wouldn’t have had if I wasn’t in the house I am in. Karmabliss is delighting in the small, seemingly insignificant things.

Karmabliss also covers the HUGE stuff…you know, the really ubernasty, fetid, “smoosh your face into a pile of gravel, glass and cat poo” events.¬† For me, March was sh*te, to the power of infinty. Seriously, anything that could go wrong, did. It carried on into April and in all honesty, I reached my lowest point in many years on the last day of April. Daaaaaaaark. Karma decided to let me recover for a bit and sort myself out, and then, a plan was in place out of nowhere, and as a result, I saw a friend I haven’t seen for 17 years. I am not going to go into just how much that short time meant to me, but suffice to say, friends are the family we make for ourselves and I reckon karma knows what it is doing by giving me that opportunity. It’s great to be reminded of who you are and of the really good people in your world.

So karmabliss, it is the little delights from your endeavours and it is the huge rewards which are the light at the end of the tunnel. We just need to know how to spot it and embrace it (“,)

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

 

 

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 ūüôā
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

Moving home when you have fibromyalgia…

Right, I have been meaning to do this post for a month now and as I have a glorious four days off in a row (BLISS) I am going to make good the VERY rare opportunity and just ramble on about moving when you have fibromyalgia.

PREPARATION AND PACING

Preparation and pacing is absolutely ESSENTIAL!!!!!! I made sure I had everything that I needed; boxes, packing tape, marker pens, bubble wrap.

Before I even started to pack, I had a massive chuckout of everything I did not use or need. This included clothes, books, nick nacks. The aim was to reduce what I was taking to what was essential (however, I will admit that there were a significant number of books that I could not let go of and I will be getting rid of them very soon)

WHEN THINGS DON’T GO TO PLAN…DON’T PANIC!

Disaster struck me despite being prepared. I had set aside 3.5 weeks throughout March with a break in the middle to recover from an operation to remove a lipoma from my back…so I thought I had LOADS of time however…

1 March – Car Crash – Whiplash, back injuries = HUGE flareup

8 March Gastric Flu (off work for 4 days and it crucified me)

14 March Operation day

As the Lipoma was the size of an egg, you can imagine how deep the wound was and it required internal and external stitches.

So, I was stuck,my plans were put back for 2 weeks…I was panicking, would I have it all ready by the 25th?? The fact is, as I had already done so much preparation, I had a lot of wiggle room..so..

I knew I couldn’t do any lifting while the wound was healing, and working full time (March is a peak month at work) with a 3 hour commute is hard enough, let alone moving on top. So what was I to do?? I planned to do a section of packing and only pack for a maximum of two hours each night. No it wasn’t easy, but it worked. The clothes were easy as I had big boxes whereby I could keep clothes on their hangers and I already had my “storage” clothes in vacuum bags. ACE! I had already decided what boxes would be used for each section/ item types and this planing goes a long way

THIS IS NO TIME FOR PRIDE – ASK FOR HELP

I was worried about where all my kitchen kit was which had been hidden in the cellar by the father, so I did ask for help from my mam. Mam packed up all of this kit and the father brought the washing machine and dryer up from the cellar (succeeding in not only shearing off the insulation of the power cable, but puncturing the water inlet pipe…which I discovered when doing my first wash in the new house and walking into a pool in the kitchen…nice one…) Anyway, I am very grateful for all the hard work my mam put in, it was a HUGE help. The key point, is that I realised that I could not do it all on my own and knew that I would have to accept some help

WHAT HAVE YOU PACKED AND WHERE????

A valuable tip when packing, is to take a picture of what you are packing up and save it on to your computer with a number as the file name, say, “bedroom 1” and mark the box with the corresponding number. (e.g if you have your computer desk and gadgets all in one place, pack them in the same box and take a picture of the computer desk with everything on it before you pack it) This saves you so much time when it comes to unpacking it is untrue!

PACK AND STACK!

When you pack, pack the boxes so that they are full (obviously not exceeding weight limits). Make sure to tape the bottoms in a sort of lattice, like a noughts and crosses graph, the more lines of tape in opposite directins, the stronger the bottom of the box and the easier to get the tape off. By packing boxes full, they are easier to stack, thus retaining as much working space as possible. (always keep your bed clear as if your body needs you to stop and take a break, you must)

ROUTINE

Unfortunately taking time off work was not an option for me as I had already been off with the gastric flu (we don’t get paid sick so have to use our holiday days..we get 20 a year so you can imagine just how ill I was to actually use some of this tiny allowance) I made sure that I still went to bed at my usual time every night and kept to my usual routine. It was very hard and I was struggling, but I new as soon as I had everything packed, I could rest.

SUITCASE

Such a small thing, but again, essential. Pack 2 days of clothes, your toiletries, toilet roll and perhaps your kettle, dried milk, sugar (if you drink tea) and a mug and spoon in your suitcase (unless you have marked up the box of essential kitchen kit). Also pack, a towel, alan key or screwdriver set (for re-assembly of furniture eg) and a pair of scissors. Make sure that you also pack your meds in a secure container in the suitcase, you do NOT want to be without pain relief during the move.

The suitcase is easily and quickly identified and there is nothing worse than needing to go to the toilet and having no toilet roll!!! And what is the point of paying out for drinks and whatnot when you can save money by having your tea to hand to fuel you through unpacking.

Remarkably, I had everything packed up over just 5 evenings and this left me 4 days to recover and refuel ready for the move…this, I will talk about in my next post.

xxxx

UK Government does not like single people

I was initially going to make my next blog all about moving home with FM, but I have parked that for now as something else has popped up which I need to get off my chest.

Ok, I pay my bills. I spend no money from my monthly pay on myself until bills are paid. Maybe it is because of the job I do, but I HATE to owe money and I despise having anything outstanding when it is my sole responsibility to keep bills up to speed.

I am not moaning about having to pay bills, I am raging about the AMOUNT I have to pay on two bills in particular, Council Tax and TV Licence.

Council Tax

OK, no problem, I know it has to be paid. However, my issue is this; As a single occupant, why do I only get a 25% discount? The average monthly council tax is £100, and if you have a  couple, that is what they pay, essentially, £50 per adult. Therefore, as a single occupant, I am of the strong belief that we should get 50% discount.

Single occupants produce half of the waste that a couple does, so that covers refuse. We still have to pay a full rent, utility bills, tv licence, other bills, so when do we get a break? I don’t get tax credit as I don’t have children, or childrens allowance, and I cannot expect anybody to help me with my monthly bills and indeed, the government would not help a single person unless they earned ¬£10k a year or less. Esssentially, this means that my disposable income is significantly less than a dual income household, yet I still have to pay out hand over fist.

Of course having children costs more and of course families are put first by the government, but I have to be honest in that it is a CHOICE to have children and parents generally only have as many children as they can afford, but again, it is my choice not to have children so why should I be penalised? Also, what about the pensioners who have paid out on their NI all their lives, Veterans and Disabled people? What about them? Oh yes, they are all being penalised because the government cannot afford to help them. SO FRUSTRATING

TV Licence

This has really stuck in my craw. For the first time in my life, I opted to pay for the TV licence by monthly direct debit instead of in full, in advance, as I have always done before.

The BBC advertises abundantly that the TV licence is split over 12 months if you choose to pay by Direct Debit, but IT IS NOT!!! The advertising is totally misleading!!!!! What they do, is split a whole years licence over your first four months of Direct Debit (£36 per month) and on your fifth month you go on to the monthly amount of £12!!!! WTF??

You are paying EIGHT MONTHS IN ADVANCE. I contested this and after reaming off a response full of legisltaive DRIVEL , TV licencing had this to say;

”¬†Allowing people to pay completely in arrears at the standard rate would¬†affect the BBC financially and could mean increasing the licence fee for¬†everyone”

B*LLOCKS!!!!! What sort of customer service is this??? Do they assume that the UK licence payer is STUPID???

Further to this;

“If you don’t have six months to run on your current licence, or you don’t¬†have a licence, you?ll make higher payments to begin with. This lets you¬†catch up, usually over five or six months. This puts you in a position where¬†you can start paying for future licences, six months in advance and six¬†months in arrears.”

Bearing in mind that the BBC is not even producing anything close to quality TV, is patronising and condescending in it’s news broadcasts and the majority of people in the UK have cable or satellite TV, they are utterly REDUNDANT and I begrudge paying for NOTHING. So what are we actually paying for?;

“I should initially explain that when you buy a TV Licence, you’re paying for a legal permission to install or use television-receiving equipment until the licence expires.

Unlike utility bills that are usually paid for in arrears, the licence fee is a legal permission and is normally paid for in advance at the start of the licence. ¬†The licence fee is fixed and isn’t related to the value a person thinks they’ve gained from it. ¬†You need to pay the full fee regardless of which channels are received”

Apparently, TV licencing doesn’t give a toss about the quality of programming, but choose to shift the blame to the government as you have to pay to own a TV. So it is not to pay for programming, to fund the BBC, or any of that pap, it is to pay for a legal permission. Two things in this really annoy me, a. the utter contradiction! b. the use of “they’ve, you’ve, you’re”..THEY HAVE, YOU HAVE, YOU ARE. FFS!!!! ¬†it is the same amount of characters!!!!! Sheesh.

Also, a single person is only likely to have one tv, whereas a family can have as many tv’s as members of the family, so again, if the licence was broken down per adult, a single person SHOULD get a discount, but no, we have to pay more, again.

It really is terribly unfair and really not cricket.

Anyhoo, rant over.