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

 

 

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.

Wow..what a year so far..

Bloody hell, if it is not one thing, it’s another!! I can certainly say that whilst my life is restricted in many ways, it’s certainly not boring by any stretch of the imagination.  

Soooo, let me review the events in the first two months of the year;

  • I find out I have to move home. The negative is the faff on that moving is and the challenges that getting it all sorted actually pose for me. The positive is that I will be closer to work and have my own space again. It’s another new beginning
  • I have to have an operation on the 14th March. The negative is that the timing along with the move is not the best, but the positive is that I get this huffing great lipoma removed from my back/ under my shoulderblade so it should ease off the pain it causes. Whoop! Negative – it is going to be an arse to heal. Positive, mam is going to help me look after the wound
  • I found out a certain energy company has put a default on my credit file in error and it has been there for the past two and a half years! Negative – tons of e-mails and correspondence back and forth. Positive – The ombudsman is taking my case and my OCD has again paid off as I had all of the documentation from when I cancelled said companies service and also when I first dealt with their mistake..
  • Further to the above problem, a certain credit reference agency has been reporting that I lived at an address that I moved from 3 years ago, despite the fact that they knew that I had moved and provided that information to the energy company, and yet did not update my record, saying that it was my responsibility to do so??? What the hell??? Negative – I have to clarify my complaint to them. Positive – I will get it sorted
  • Rheumatologist appointment was absolutely shite. It was just a repeat of the last one four months previously and in short, he just said there was nothing more that could be done for me apart from pain management and off you go. GR. Negative – The appointment really brought me down. Positive – I have educated myself about FM and will continue to try and help myself. I WILL focus on what I CAN do and I will not lament what I cannot do. The other positive is that I have 2 great doctors and a brilliant nurse practitioner at my local surgery who are brilliant and understanding and I know that I can rely on them to listen in case I need a medicines review or have any problems
  • I was involved in a car crash on Tuesday and not only do I have whiplash, my trapezius along with the muscle down the right side of my spine is in spasm. Negative – OWOWOWOWOWW! Positive – Physio to get sorted and a claim as the crash was the other parties fault
Soooooo, a lot of challenges in a very short space of time and I am hoping that by the end of March, everything will settle down.

Days of the week – As I see them

I adore humpday, it is one of the best days of the week. For those of you not familoiar with the term, it goes like this; If you imagine that Monday is at the bottom of the hill, the weekend looks soooooo far away and it is an uphaill struggle. Tuesday is pretty much neither here nor there and has no real identity as days go lol. Anyhoo, you get to Wednesday at midday and it is all downhill to the weekend, ergo, humpday. 
So this led me to have a little to and fro with a friend on FB and assign further identities to the days of the week (it was a slow news week (”,) )
Monday = Moanday: Just get it out of your system. Nobody likes Monday’s, so have a 5 year old style tantrum to vent all that bad karma out of your spleen and set yourself up to use Monday as a springboard to the rest of the week
Tuesday = Tootday: Ok, so we have established that in my opinion, Tuesdays have no identity apart from being a blah blah blah bleh day. I have therefore decided to declare “toot” to as many people as possible on this day. The main victims being my colleagues at work. (I already get odd looks on the bus so have decided to abstain from saying toot in that scenario)
Wednesday = Humpday: We shall leave the mighty humpday as it is as it gets me through the week (”,)
Thursday = Fursday: this is the day where you reward yourself for gettinng this far and take the opportunity to snuggle up in something (anything?) lovely and soft and just find real comfort for a couple of hours
Friday = Friteday or Fryday: Depending on your inclination and whether you are minxy or a foody. If you are minxy, make this the day that you jump out on someone and say boo! Or even just pretend to be a rather lacksadaisical bear (or tiger) and just say “Gr” with supporting claw hand motion thing…Fryday for foodies is self-explanatory
I am still contemplating on the re-identification of the two glorious days of the weekend and as it stands, I have only re-named Sunday snugday as it is a lovely old sleepy day, however, this does detract from the necessity to have adventures at least once a week so is currently under consultation
Yes, my perceptions may seem slightly unhinged, but perception is half the battle to whether you are going to be happy or sad on a given day, so I am going to stick with warping my own perceptions of reality at evry given opportunity
There is a time and a place for being sensible and all growed up, but nobody knows when you are acting like a complete juvenile in your imagination. Long may it remain (^_^)

Sooooooooo…this is why I am doing this

Oki. This blog is not going to be about me whining on about my life, or various challenges.


What it will be, is my way of finding solutions, overcoming any hurdles and making the most of every day.


So many of us get completely absorbed in our working life, family, home and we lose sight of what it is to truly live. I am not able to go out and start skydiving, and I do have to go to work every day to pay the bills, but there is so much more to life than the repetitive, monotony that is being a grownup.


I have had eighteen months of what can only be described as “challenges”. It all started when I prolapsed 2 discs in my back (still kept going to work), then 6 months later my hands started to seize up, the joints swelling and excrutiating pain. This moved on to pain in all of my joints and bones and a year later, I have a diagnosis of Fibromyalgia, further tests being done on my joints, tendons and ligaments, an arrhythmia for which I am going to have to have a portable heart monitor for 24 hours (already had the bloods done) and as of today, the routine op to remove a lump in my back has had to be referred to be done under a general anaesthetic as it is too big to remove under a local.


I always used to be so healthy, but in the past 18 months, it has all gone pear-shaped and if it has taught me anything, it is that life cannot be wasted. We take our health and well-being so much for granted that we work hard every day and focus on our day to day lives and worries whilst missing the main point. To “live”


I am really lucky though, as an army child, I was lucky enough to travel the world and see so many things. As a teenager, I moved out of home young and lived life to it’s fullest. Even through my twenties, I was surrounded by long-term friends that made the difficulties of that decade bearable and stuck by me even when I moved 300 miles to get away from the town in which I lived. I look back on all of that time and the wonderful times I had, and indeed, the serious adversities I overcame and I am grateful that I had the chance to really live. The last 5 years since I moved have passed by in a blur with some wonderful adventures, and yes, my friends are still there with a few more added for good measure.


However, the last 18 months have battered my health and as I said, I have had a wak up call in that I need to stop and re-assess how I live my life. I don’t want to stop working, and I sure as hell do not want to stop having adventures. I haven’t been out on adventures since May and this may be the result of a touch of cabin fever, but I see it as a way to re-focus and to re-build my life.


So, maybe you will read this and be interested, maybe not, but I am grateful if you have read it at all xx