Spring forward? Stop Stealing My Sleep!

Twice a year I wake up more tired, dazed and confused than usual. (Trust me, they are strong words to be uttered by a fibromite) Can we just stop messing with Daylight Saving time?

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The beginning of British Summer Time is marked by robbing us of an hour of our well-deserved sleep and no more. I completely respect the need for this tactic to confuse the enemy in the World Wars, completely understand, but for all that is by crikey can it not just stop now? #grumpy

Granted, it is only one hour, but in my lifetime, that is 40 hours, the average UK working week I saw a fantastic image which asks the question;

imageHey, it’s a valid point!

I must however concede to being a complete hypocrite because I adore the extra hour in bed that changing the clocks bestows on us to mark the beginning of British Winter Time.

This does however raise the question; How can we as humans proclaim that two days in the year mark the beginning of a season and further to this, why not do it in increments of 30 minutes to mark all four seasons instead? #genius This would be so much easier to deal with, although in the UK, weather is not usually as predictable as time

Case and point, it does not begin to feel like Summer until July and Winter seemingly begins mid-September

So I shall spend the rest of my Sunday trying to wake up and get moving, but with a flare from the seventh level of Hades, it doesn’t look like this Easter Sunday will be a productive day after all.

Mindfulness and Betrayal

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This week I had an experience whereby I was betrayed not just by a single person, but a group of people. It cut deeply, especially due to the circumstances.

No it was not fair, it wasn’t right and it was certainly inappropriate. The saddest part about it, was the trigger. You know, that one person who is always the one to create drama in order to ingratiate themselves with others? The rage I experienced was so intense that it made me shake, it sickened me to my core.

I am not going to try and say I dealt with it correctly on the day, in fact, I didn’t face it at all due to the circumstances. However, I did project it on to another individual who should not have tolerated that type of behaviour. It manifested into something else¬† entirely because I just could not correctly enunciate what I wanted to say. The difficulty I faced was exactly that of a school playground. The politics, the pack mentality, the juvenile behaviour (the fact it was the behaviour of grown adults is really quite laughable)

The irony of the things that were said could make for an infomercial on the subject of hypocrisy, but I choose not to indulge it further. Why? Because I want to let it go and focussing on the details will not enable me to do that.

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I have been reading up on “Mindfulness” a lot recently because I find that it is the most effective form of managing the all encompassing, suffocating depression that engulfs me. (The depression cloud has returned recently due to a very difficult period of fm flares and innumerate other problems) In short, mindfulness is right for me.

So, how do I deal with this sickening, hurtful situation in a mindful way? (Clearly it is a work in progress)

1. Understand that the group was reacting to a trigger with the added fuel of boredom and frustration

2. Accept that they would not have said these things if they were aware that I was present. This indicates that either they did not intend to be hurtful or on the other hand, it betrays their weakness because they did not have the fortitude to say anything to my face

3. Let it go. Don’t keep replaying the situation (In truth, easier said than done). Replaying the situation has the same effect as the game of Chinese Whispers.

4. Focus on what really matters. This situation is beyond irrelevant in my world. I have much bigger challenges to deal with. They have no right to infringe on my happiness and health

Yes, we all want to set the record straight, yes, if wronged, we want to put it right (usually very publicly) but in some situations, it is better to not sweat the small stuff. Retaliation just means you are as bad as they are

So yes, it hurt, yes, I felt betrayed, but it wasn’t me that behaved badly so I will not punish and hurt myself by being angry and upset. I will focus on being mindful and hopefully I will be able to shrug it off

My world on my terms WILL be a happier place

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Four Years….

Wow…four years since I last posted. I have changed, my world has changed, inevitably THE world has changed. New marriage, home, herd…same old fm. In summary, I have lost, found, loved, hated, learned and nearly died, not necessarily in that order

2016-03-25-07.42.00.jpg.jpegI am developing new skills every day as well as expanding on existing ones. I have a greater need to write than ever, not just for pleasure, but as a form of personal therapy and creative expression. I find myself seeking intellectual stimulation in a world saturated with brandspeak, textspeak, abbreviation and an excepional lack of grammar only to be confronted with the fact that this is the ‘way forward’ a requirement for success. This makes the bile rise in my throat and it is getting harder and harder to gulp it back and smile.

Perhaps turning forty is the impetus for this increase in introspection, retrospection…exospection, vexospection. Yes, I am fully aware that the last two words are not real, but creating nonsensical text to enhance flow seems to be de rigeur these days.

2016-03-25-07.39.57.png.pngMisogyny and sexism is still sickeningly rife yet the pc crowd stampede against standards which Generation X grew up with and made the majority of us well adjusted adults

Our world is a terrifying place that is spiralling out of control and I wonder if the next generation can harness the wild stallion of chaos or if they will be trampled by flailing hooves. However, I am sure the previous generations considered this and it is clear that the primary need is for perspective and seeing the whole picture, not just events in isolation?

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Acupuncture: My first session

I had my first acupuncture session yesterday morning (my lovely doc is trying to help me as best he can bless him ūüôā )

I had had an appointment with my doctor the same morning prior to the acupuncture session (in relation to having real problems with restless leg syndrome recently as well as Achilles tendonitis, which is grim) and as the acupuncturist is based at the same surgery, not only did she discuss the conditions I have and what needed treating, but tshe could see them on the computer system too. So, the aim was to treat the FM, RLS, the pain from my crumbling spine and my ankle.

The acupuncturist said she would just start with a few needles and will build these up over a number of sessions.

So, to start with, I had one needle in each hand in the soft part between thumb and forefinger, 4 in the back of my neck, 3 in the front of each leg and the grim one, one in each foot between the big toe and next toe grooo.

In the first instance, I was a bit surprised by the flush of heat through my body and was a little uncomfortable in that I couldn’t move my fingers I didn’t dare lay back or move for fear of ramming the needles further in or disturbing them

The acupuncturist said she was going to leave me on my own for 20 minutes and then turned the light off and toddled off

It was odd just sitting there and I think I was very tense due to the fear I described above, but I thought, ok, let’s just see.

Anyhoo, I have bruised a bit where the needles were, and I do feel pretty much the same as before I had the session. However, I was wiped out last night, but that could be attributed to the trek to get to the session (walk, train, walk, session, lift back to work of 8 mile, full day of work etc) Although, I did only wake up once last night which is GREAT for me lol

I am signed up for 6 sessions with a view to having more, and will stick to them to see if it is beneficial. I am very hopeful that it will help and friends on the FMA UK forum have also been very helpful in sharing their experiences of acupuncture, so watch this space!

Travelling when you have Fibromyalgia

Hola,

I moved about 5 and a half years ago, and whilst it was one of the best things I have ever done, the downside is that I am 300 miles away from some of my dearest friends. So, when I was invited to a wedding, there was no way that I was going to miss it.

Now, I have not travelled back down south since March 2006. In one aspect, the worry of being able to make the journey, the worry of not being able to go out drinking and the recovery time on my return all seemed just too much to deal with and as such, I allowed my illness to dictate my life. This is something I vowed would not happen and yet, there it is. (The cessation of my monthly adventures is a whole other story)

So, back to the wedding. I HAD to go, no two ways. My brother by proxy was getting married to an amazing girl and I could not miss it, not under any circumstances. So what to do?? As with anything to do with FM, plan plan PLAN

First off, I planned the outfits and luggage. Now this doesn’t sound a big deal, but the transport of luggage is uber important when you are travelling by train, especially when you have to make a change. I have a wheeled suitcase and agreed with the Wookie that we would share the one case with a shoulder bag for what we needed during the journey. We were going to be away from the Friday morning and back on the Sunday lunchtime so I packed just 2 outfits pluss the formal dress (all very tightly folded as all hotels will give you an iron and an ironing board. If you are not sure, ring ahead and ask prior to your trip) Usual packing rules applied, all toiletries in one carrier bag, makeup in it’s own bag and of course, tuck all underwear in your formal shoes!! LOL

So, the travelling outfit. This can be used both ways as all pride needs to be thrown out the window. Whilst being clean and tidy is an essential part of life, do NOT be a slave to fashion if you are not going to be comfortable!! Of course, check the weather too as you do not want to be too hot as you hit the London Underground. People do not realise just how hot it get’s down there and in addition, you may have to exert a lot of energy just to make your connection…and that is another story to be told later…So wear something light and comfortable (loose fitting if needs be) and you can always put on a mac or a jacket that can be easily carried on top of the case.

Depending on the length of your journey, you need to prepare. Disaster struck on the Tuesday prior to the journey when I was struck down with the flare from hell. It was so bad, I even had to call in sick to work, which is something I avoid doing at all costs. I had to be realistic, I just didn’t have any strength. Upon trying to go back on the Thursday, a colleague gave me a great piece of advice. “You have had this booked for ages, just think f the money you will waste by not letting yourself get well and then not being able to go at all”. Also, think on this, if you only charge a phone up to 50% of the battery, and keep doing this, after a while, the battery will not charge up fully at all and that is exactly what dealing with FM is like.

Ok. So you need to seriously consider the cost of your journey and the time of day you travel. I decided to invest in an advance first class ticket. No, not to be snobby, but to ensure that I had a seat, and a comfortable one at that. The added bonus of first class, is that there is more room, free coffee/ tea (although not great coffee to be honest) and the carriages are air-conditioned. With East Coast, you can also choose where you sit at the time of booking and even opt for a quiet coach (although smaller, they sometimes accomodate the buffet area so there may be a bit of traffic) As we booked waaaaaaaaaay in advance, for what would normally be £480 for a single journey, we got 2 first class returns for a total of £340! WIN!

Despite having all complementary food etc, we packed a lunch and some drinks. There is no point paying out rail prices when you can save some money with a little bit of forethought. And if you are foodfussy like me, if you make it yourself, you know you are going to enjoy it.

I mentioned times and I will admit to falling down on this slightly. No bother getting down South, and I took note of the Underground engineering works..HOWEVER..when you book a full journey, the companies do not take disability into account with regard to making the transfer from Waterloo to Kings Cross. In addition, the engineering works had MOVED location by the Sunday so we had to plan an entire new underground route which meant that we got to Kings Cross with only 8 minutes to spare (I am army-raised..if you are not half an hour early, it is too stressful) “Cutting it fine” is not my preferred process when it comes to travelling. I digress, if you can, get the earliest train available, you want to get one that avoids the London rush hour (for example, our train landed at Kings Cross at 9.30 and our train out of Waterloo wasn’t until 11 so we had plenty of time to make the transfer and didn’t have to battle the workforce)

Also, the earlier you travel, the less people are on the train and therefore, it is a lot quieter. (This is exemplified by our journey back, as we should have left Andover much earlier. We left at 7, and this meant hat we got the 10am train out of Kings Cross which was HEAVING) The earlier train you get out of main stations (I am talking 6/7am) the better. Also, if you can, make sure that you check out all routes for engineering works and alternative routes.

Another important thing to consider, is to be realistic about what you CAN do on your excursion. I attended the ceremony, but wsa going downhill rapidly and I knew we had the journey again the next day, so I made my apologies and left the wedding. I had made the effort for the most important part and my friends understood why I had to leave. Don’t push yourself more than you normally would if you have big journeys, drop it down by about 10-20%

So, in short, plan. Plan for any eventuality, and you will be fine.

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