It’s been a while … Pace yourself

Well,  Good Morning to you.  Unusually, it’s another nice morning here in the North East of Scotland.  After yesterday’s heatwave and my unusual positiveness in greeting my fellow Affa Sair members; I seem to be in the mood to do it again.

This follows an event filled afternoon and evening which in normal circumstances would have me weeping with stress and emotion but instead left me smiling and very happy.

This is where you enter the terrifying realms of my mind so hang on tight.  After looking at my Google Calendar of the week I noted that I had acupuncture today at two o’clock.  Ah well, I thought “I better get the housework done so I can relax after the needle session and just have a deep sleep without rushing around trying to have tea ready for Rosie when she comes home from work.

I thought I’d already spent enough time on ‘Affa Sair’ matters for the day, starting around 6am with reading a very complicated, yet interesting, email between the intelligent part of the chronic pain campaign team of the Holyrood-based Cross Party Group on Chronic Pain and Affa Sair, and a representative of the publicly-funded Chronic Pain Industry that has grown up out of “chronics” daily battles with excruciating and debilitating pain in Scotland.

The email was filled with many acronyms and twaddle designed to deflect any information-seeking enquiries. Then about an hour on designing new promotional material for us to use on Information Tables throughout the coming year.  After that, I inflicted my opinions on members with comments on posts left over the weekend.

So, duty done, onto getting the house in order for the week ahead.  Two cats and their two supposed masters make an intolerable mess to my OCD-addled brain.  Ironing, hoovering and other bits and pieces done I was just about to start on making my lunch, our tea and Rosie’s lunch for today when my MacBook Pro pinged alerting me to the fact that the acupuncture appointment was actually in half an hour!   Aaaargh – panic.  Now I had thought of using my buggy to take me to the appointment on Tuesday but now (on Monday) I didn’t have the time to get some lunch, get the buggy out of the garage and traverse the untested route to Bank Lane in half an hour.  So luckily, my aged Father (85) who had already been out in his similar coloured buggy,  was free to drive me to needle-wielding James.

I had just managed to eat one slice of toast for my lunch when he arrived.  So, I left the other slice for Rory, who is partial to Clover, and ‘sped’ out the door.

Acupuncture was damn sore as James was working hard on my gut as well as my pain.  You don’t need any further details other than he was attempting to help my officially undiagnosed IBS.  I left there at 3:20 and phone Dad to pick me up whilst I was sitting at the wall at Bank of Scotland car park in the lovely heat and sunshine.  Dad likes to drive with windows shut at all times – no matter the weather – so you can imagine the heat in the car.

Anyway, home and straight to bed surprised that Rory had left the toast alone ‘cos he was sound asleep snuggled up in my chair in the Summerhouse.  Patch was upstairs in the front bedroom.  I woke up at 5:30ish when Rosie phoned to say she was just about home.  By the time I got downstairs, the pain had come back with a vengeance and I crawled out to the summerhouse for a drink and catch up with my other half.  Poor Rosie had to cook tea ‘cos I was in quite the state and it continued all evening.

In-between coffee and biscuits and television viewing, Rosie did her best to set fire to the summerhouse whilst trying to hang some car window blinds on the summerhouse windows.  This DIY plan is because the sun streams in throughout the day and is blinding if you are sitting there.  She had only gotten one screw in when she knocked the table on which stood blazing citronella candles in a futile attempt to get rid of the wasp which she insisted was terrorising her.  In reality, it was just buzzing around the bright yellow canopy we have on the ceiling of the summerhouse minding its own business.  But, girls will be girls.

One candle and citronella wax ended up on the floor – which she emphasised was nothing to do with her.  She then thought she might try to lift the wax which had dried on the (foam) floor by melting it with the flame of the candle lighter.  (I don’t think she was serious but I’m not too sure).  I wearily got off my chair and fetched her a wallpaper scraper to do the job.  By the time we had cleared up and were back inside the safety of the main house,  I was done-in and really in a helluva lot of pain, again.

Now, to the really eventful moment of the night.  (Yes – there is even more nail-biting excitement ahead). We started to watch the Channel 4 programme “Catching a Killer – The Knock at the Door”.

Catching-a-Killer-Channel-4-Hang-Yin-Leung
Mr and Mrs Lin – ex Hong Kong Police Officers

This was a deeply shocking yet true story of an attempt to catch the murderers of an ex-Hong Kong policewoman who, with her family, had legally resettled in England after the handover of Hong Kong to China.  They were a hard-working family with their one son at University when on 31st January 2017,  Mrs Lin opened the door to a gang of six youths who proceeded to bulglarise her house while pinning her to the floor and slapping her on the head.  She died some 12 days after the attack but was able to give the Police a gripping account of the event before having to be placed in a medically induced coma from which she never woke.

It was a tremendously thought-provoking programme to end the first really good day of the year.  I made my way upstairs having taken a Zopiclone sleeping tablet as part of my new regime to get my sleeping pattern into a more usual one.  About an hour later (I think) I was woken by Rosie shouting me to close the MacBook I had been writing a quick email to my one and only male friend.  Groggily I complied and then woke up at 6:30am with Patch clawing at me to feed him and his brother.

I can report that yesterday’s acupuncture has worked, as usual, and I feel good again today.  I plan to make the most of it having done most of the housework yesterday.

Importantly, for all chronics, is to remember the dreaded pacing though.  It is a simple concept but oh so difficult to get the hang off.

Like all chronics, I tend to go berserk when I get a good day.  I try to do as many things as possible, pretending I’ve no chronic pain problem and am a “normal” happy-go-lucky Scot.  I’ve tried pacing for around 20 years I suppose but have never got the hang of it.  The idea is to stop yourself before you do too much and so make your pain worse.  Thing is, I never know I’ve done too much until I’ve actually done too much!

I have it ingrained into my mind that I’m expected to have done all the work needed to keep our house and home pristine so Rosie just has to come home and be presented with a beautifully cooked meal as if I’m some 50s housewife who dresses up for her husband before he comes home from a hard day at the office.  The last time I dressed up as a woman my own Mother didn’t recognise me.

So, the point of all this drivel is quite simple.  Pace yourself and go and enjoy the sun.

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Pain-induced Rambling

This promises to be a long one so bear with me – especially the newcomers, not used to the wanderings of my mind.

So then, today.  Well, brain pretty much firing non-stop. Body definitely not. Increased pain abounds.  It’s totally everywhere from toes to hair on my head and all points in between.  Take it that this is all due to my three days of meetings.
Yesterday’s (with the Scottish Government guy) being the most enjoyable and possibly most important in the greater scheme of things, but the previous two being totally necessary for my personal life.

Now, the pain bit. Feet are definitely one of the worse bits. This isn’t helped by my diabetic problems.  They are also affected badly by the body-covering allodynia (increased skin sensitivity).
Shins are their usual agony and knees totally off the scale despite covering them in lidocaine infused patches since last evening.
The jiggly bits in the middle we’ll leave alone for decency’s sake and so, onto the abdomen which is today bothered with the multi-factorial and spasmodic pain of CRPS, adhesions and IBS type problems;
the chest with the lovely choice of rib cage and sternum joys thanks to costochondritis;
hands, wrists arms and shoulders are all crying out with their problems of CRPS, circulation, eczema and self-induced pain of being daft with sharp blade on Tuesday – trying to fix a garden hose.
Shoulder blades and collar bone are literally breathtakingly sore thanks to CRPS and then neck with its unusual sharp pain of something or other;
mouth and teeth are making themselves known, thanks to the continuing battle with mouth ulcers and ultra-sensitive teeth;
then the annoying nose with its problems from the CPAP facemask used to combat sleep apnoea;
itchy, dry eyes and ears.  Finally sore hair thanks to ……… CRPS. That’s the body covered then.

My mind is unusually active (as you have no doubt worked out by now) though battling exhaustion at same time. An interesting combination.
Ach well, at least it’s a wee bit sunny though rain is expected by about 3 o’clock.

I could’ve sworn there was something else I was gonna mention but I’ve forgotten what it was now. Something to do with SNP/Tory battle I think but Jeni doesn’t like me bringing politics into the group which is fair enough. I could go on and on but better not or she’ll rise from her sick bed and give me grief.
Poor lass has been suffering for what seems like ages now. It has affected the help I get with the Group but I suppose that’s why they’re two of us. It’s becoming a bit of a drag though; so for gawd’s sake make an effort and get better would ya!
It’s great of Alison and Roz to step up and take charge of today’s meeting (1pm in Room AGB14 of Moray College) so a heartfelt thanks for that ladies.  We’ll try and give you more notice next time (which could be sooner than you think or hope.) Don’t worry though – the most important bit about today’s meeting has been taken care of as getting the key for the coffee and eats cupboard has been sorted. Seriously guys (and I mean guys) we need you to help us out occasionally too. I know there are few of you but you would enjoy our meetings and help me tackle the oestrogen overflow in the room. It’s a thankless task trying to put the testosterone-fuelled superior point of view across at times. The ladies are good at the coffee and cake stuff.   Ahem……..

Well that’s me finished rambling for today.  Enjoy the meeting, if you’re going.  Do let the other members know what happened there.

Get comfy in your huffle-buffs

After our revelation on the meaning of “mizmaze” which we can now use to describe Brain Fog, here is another from Susie Dent:
“Today is surely a day for huffle-buffs: a favourite old Scots word for clothes that are comfy, well-worn, and born for lounging”.
I think ‘huffle-buffs‘ clearly describes the outfits we wear when having a duvet day or just escaping from the world.

Grasping the nettle of middle management roadblocks

In affa sair’s Facebook page a member opined that the whole NHS system was broken. Another member had been moved up the priority list after he had contacted his local Councillor and MSP and not to do with his medical need.  Whilst glad to accept this he still thought it unfair.  Other folk  thought it down to money.  I thought it would be good to continue this debate in a more open forum.

You know, I’m not sure more money is the answer. It’s certainly not the only answer. The NHS is so behind the times with I.T. systems and their procedures are terribly inefficient. It’s the old story of too much middle management who get a great deal of money for very little outcome.

There is so little regard for the patient in the ranks of the middle managers. Budgets and targets are their priority supposedly to make the service more efficient cheaper to run. In fact the opposite happens.
There seems to be a lot of personal infighting with managers working against each other in power grabbing attempts. Not only is there scant regard for the patient in these ranks but also for the staff members under their charge.  It seems middle management are causing roadblocks to all new ideas which might affect their cosy positions.
Of course there is always good mixed in with the bad but unfortunately the bad are winning and are not going to give up their prize easily.
The people on the front line are not valued as they should be.  They are paid peanuts, so as the old adage goes, “you pays peanuts you get monkeys!”  Changing where the considerable NHS funding goes might go some way to helping the service look after the patient as it was supposed to.  Is it right that managers with no medical expertise should be at the top of the earnings scale?  No.  The playing field needs to be levelled.  Give more money to the bottom front line level and you will get folk who care more about their work and do a bit more for the patient and each other.  The Managers should try pulling their staff along with them rather than pushing.
I remember watching a TV programme many year ago where an industrial Knight of the realm was charged with making a hospital more efficient by putting his proven private sector policies into practice.  He was met with roadblocks all the way.  Folk trying to hold on to their little empires and people from all levels of the workforce refusing to change.  A sad state of affairs that hasn’t gotten any better.
Nowadays, not even the politicians who are supposed to control Health Boards, have any power or are unwilling to force the Boards to make necessary changes to their services.
But, who should be in charge.
Is it right that Politicians should have the final say on how your local health services are run, or, should people with the medical expertise decide on how best to spend their allocation of public money?
Should local Health Boards have more people from every walk of life on their panels or should it be left to the more well-off in society who have no real need of public health services to decide what’s best for the populace?
Should the current obsession with targets and the large section of staff used to police them continue?  How else can we see if our money is being spent on the right priority?
I’d love to know if you agree with my comments or are upset by them and think I’m talking out of a place where the sun don’t shine!

An Afternoon With Bowen

Last Saturday, ‘affa sair’, had its first weekend meeting. The Group had been offered a Taster Session on Bowen Therapy by local practitioner Maurizia Ferrari. ( http://ferraribowen.weebly.com/ ).

The Bowen Technique is a gentle soft tissue therapy, it is one of the most fascinating therapies available which does not use adjustment or manipulation to gain results. There were 10 sessions of approximately 20 minutes each, using three therapy beds and one padded chair in a room at the Alexander Graham Bell Centre in Moray College.

The centre has been jointly funded by Moray College UHI, HIE, NHS Grampian and EU, and provides a principle research, education and continuing professional development (CPD) facility for the life science sector in the North East of Scotland. The centre, is jointly occupied by Moray College and NHS Grampian with NHS Grampian allowing ‘affa sair’ free accommodation for their monthly meetings.

Maurizia had spoken at one of the Group’s monthly meetings and was so popular with members that they (figuratively) leapt at the chance to have a taster session at a nominal price with half the cost being met by the chronic pain support group.

So that those members having a treatment were left in peace, the waiting ladies, and one man, remained in a break-out area just outside the door of the treatment room. Maurizia later described the waiting area as having a very Mediterranean bar-like atmosphere hearing the people having fun and laughing. Such was the happy atmosphere that many members stayed there all day from 12 – 4:30pm. Normally chronic pain sufferers are in a rush to leave as the pain becomes more and more unbearable.

To say that the afternoon was a success is an understatement.  A week on, those who took part are still finding benefits from the short treatment, on conditions which in some cases have defied improvement for many years.  Here are some of the comments made by the ‘affa sair’ members.

Had a good sleep last night. Woke up this morning refreshed and without pain in my leg. Have not been nodding off today, so all has been good.

I was relaxed afterwards, but a wave of dizziness, no exhaustion, suddenly hit me just after I walked out and then went away as suddenly as it came. I definitely had more energy yesterday evening. I am less tired – it’s more than I’m just having a good day for me, and yesterday evening I was unusually untired. Pain wise it’s less than just after treatment, and the nagging ache I’m used to isn’t there. The intensity of the pain isn’t much lower than usual), …… but the type of pain is very different.

Weirdly, during treatment in the rest bits, it often felt like an electric shock – very much as if I was using a TENS unit on lowest setting. I could feel something going on between the different bits that had just been prodded, as if the nerves were joining up the dots.

I did not go to bed when I got home, I chilled. Hubby made dinner, I went to bed after 12 and got up at 11 :30 this morning and still feeling tired now, so will chill yet again. I also felt calm and in a good mood; again, I say fab group and lovely ladies and gents.

When I woke this morning, two hours later than normal,  my usually sore feet were extremely cold and felt hollow inside. Took ages to warm up. My knees are still well and I felt more energised than usual.

I felt super relaxed afterwards and thought I would sleep but even though I was relaxed and had more energy, I slept very well last night. I thought Maurizia was so gentle and effective and I genuinely felt like she had something in her hand, like a heated sphere and that felt unbelievably good and very soothing. Thank you so much for organizing this and for Maurizia giving up her time for us. First Saturday in a loooong time I have actually left the house for something besides shopping.

Enjoyed everyone’s company. Today was really good.

Yes I feel great the night. Not sore getting out my seat. I think it’s helped me.

I think I will sleep like a baby the night.

Still the unfittest but there’s a step up

Day 2 at Gym today.
I was feeling bloody awful last night and this morning. I took ages to decide to go the Gym but after a good talking too by myself was glad I did.
It started off pretty badly with ridiculous spasms in my backside and leg. It was hell all through warm up but I just took things really easily as Dave keeps saying. Sure enough, by the time I was half way through the hour things were getting a lot easier.
We were down to only four of us – nothing to do with my personality – and it’s still a friendly wee group. Dave was joined today by his daughter Molly who has the family trait of smiling a lot! She was very helpful with me and took the chair to me pretty quickly and even without asking in the end. I’ve got past the embarrassment of it. No one bothers and are probably too busy concentrating with their own routines to be worried about the young spazz in their midst.
We had a lovely new piece of equipment today to play with. It was a ski machine. Now this doesn’t mean you take off down a slope but, in my case, I was able to sit in my chair and pull down on the cables while the fan whirrs away as you pull the the cables. I do enjoy chest muscle stuff. Find it easier than the rest to be honest.
I had a personal best.
On the second time on the steps for me I managed to use the big step – wah hey!  I used it twice ‘cos I miss out the squatting routine on the circuit.  I even managed to be more
co-ordinated with my two legs and a stick.
My brain wasn’t up to co-ordinating things in the warm up and cool down stages though. This “move an arm and opposite or same leg at same time” just doesn’t commute for my addled brain. I do find it funny but also frustrating if I’m honest.
I must’ve been working harder as my tee shirt was pretty soaked through today. Too much information I know but at least I’m not telling you what else was sweaty.
I had a superb acupuncture session in the afternoon with James. I could tell he was well surprised when I told him I’d been to the gym. I made it up the stairs easier too. There were a lot more needles involved this time as I spoke about the cognitive troubles I’m having more and more. Chinese medicine speaks about a blockage of chi reaching the brain. Makes sense to me with my Reiki background. There were only a couple of needles which hurt a wee bit. Worst for me was when James holds my arms to measure pulses. Just my body’s own special way of reacting to allodynia (being abnormally sensitive to touch or other sensation). I thought my arm was ready to snap at one point. My way of dealing with it is to throw Reiki at it. Works for me.
The hour sped by especially as I was well unconscious after a few minutes of all the needles going in. Unfortunately, the next client rang the doorbell to announce her presence and I felt the need to change my underwear.
Made it home, straight to bed woke up 3 hours later when Rosie rang to say she was just on her way home.
A good day all in all.
Only blighted by stress in arranging the Bowen Therapy Taster Sessions for Affa Sair group on Saturday. Gawd, I used to be able to do these things in my sleep.
Ach chronic pain works in insidious ways does it not……