A quote from a lifelong friend and mentor; Winnie the Pooh

You know to whom I am referring to don’t you?

*laughs*

Look, whatever knock yourself out. It is plainly obvious that you have very little else in your life to shout about.

Go google the questions that people ask and give them the answers. You do not need a brain to do that, you are in no way intelligent so please don’t attempt to pass yourself off as such.

I have had MS for the past ten years Mrs- TEN Years- I am so past that, that it isn’t even funny or relevant.

Anyways- Tonight is injection night.  I have literally just given the jab. I decided to go with the upper left hand side of my tummy tonight, I haven’t actually used anywhere on the stomach location since the first week of taking Rebif, so hey- my thighs got a break tonight!

I can’t even tell where the actual site location was, I usually get a tingle when I use a thigh and that helps me spot a site but there isn’t any sensation at all when I use the tummy.

I received a letter from the MS nurse today. I have a new batch of Meds to collect from the Hospital Pharmacy on July  26. Exciting stuff. Yeah okay not, but I don’t think that I would forget to run out of Rebif.

The DH is watching England about to lose tonight- Oh c’mon you don’t really think that they will win do you? It’s England- enough said!

What is MS?

Multiple Sclerosis (MS) is a condition of the central nervous system. It is the most common disabling neurological disease among young adults and affects around 100,000 people in the UK. MS is most often diagnosed in people between the ages of 20 and 40, and women are almost twice as likely to develop it as men.

Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage many symptoms well. Although its cause is not known and a cure has yet to be identified, research continues into all aspects of the condition.

MS is the result of damage to myelin – a protective sheath surrounding nerve fibres of the central nervous system.

When myelin is damaged, this interferes with messages between the brain and other parts of the body.

For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

What are the different types of MS?

There are three main types of MS, each with its own characteristics. Regardless of the ‘type’, some people may be only mildly affected throughout their lives, while for others the effects may become quickly noticeable. Most people with MS experience something in between these extremes. It is not always clear what type of MS someone has, particularly when newly diagnosed and regardless of the type, health professionals will base symptom management on individual needs.

Remember that whatever name is given to your MS, how you best manage it will be a personal thing – any name for MS is only a guide to help you and your care team find the best treatment.

Yes, they have to be.
I don’t know where to start! It is just way too funny.
If you are a member of UKS then you have to be retarded in every sense of the word!!
Does anyone over there have a brain? or do they sniff glue 24/7 ?
Maybe that’s why their sprogs are all retarded ?
It’s Saturday and my free day,so I won’t type up a whole entry but yeah. UKscrapsmack…
Way to go posting annoymous- does that make you feel brave ?
And just for members of UKS- I do not claim DLA under a ‘ false claim’
I have MS, it fluctuates, It is the nature of the beast my dear.. Are you a Fibro or an ME? Still have similar difficulties as MSers but aren’t recognised as being disabled?  That sucks but you know you are a faker in every way because you do not have a medical evidence , no matter how much they poke you. I have two MRIs and a lumbar puncture.  I am disabled. You are a fake.
Seriously funny and I will address the comments raised when I get online.

And they still haven’t figured out that this was a serious windup that was done for shits and giggles when I was bored!

Oh UKStupid!

Not written by myself but by a very wonderful fellow MS’er…Sad thing about it that although it is meant in a humorous manner it is completely true!

———————————————————————————————

wish to apply for the position of ………………………….
I am 59 years old and just a bit p.ssed off about not being able to retire at the promised 60 year cut off point for women cos this governments added years on, somat to do with work till ya drops.

So now Im young again this government are cracking the whip, and making me apply for jobs for which they think Im capable. Ive some neurological condition called multiple sclerosis which makes me look ok (if you need glasses) and am told I am ok by the new ESA agency employed by the said government, so here goes

: THIS IS WHAT I CAN DO:

For example, I can do most things except sit at a keyboard looking at a screen all day long because bright lights affect my vision with resultant headaches. I experience double vision too so a steady chair would be a must as I end up dizzy. Cant cope with unscrewing or fiddling with paper clips as health and safety will come into play as my fingers are numb and rather clumbsy as are my feet, oh and I cant walk very far as I tend to walk rather drunk, especially when fatigue sets in, which means I might only be able to work some weeks whilst catching up with sleep for sometimes 10 days or longer.

Therefore I would need at least 6 months off work each year dependant upon any relapse of my disease which might mean even more time off work. The temperature of my working environment shall also have to be modified unless you have some kind of climate control installed. Heat affects my whole body making me very fatigued. My bowels are controlled with IBS medication however occasiionally they dont work properly.

I shall also have to ask for a very good wage for the following reasons: I shall need to refuel my car (petrol costs) and keep it on the road because I cannot stand up for long and you know what public transport is like, Im likely to break a leg or something because of my balance problems (thats if I can reach the stop without problem). Sometimes I get lost for no reason other than I sometimes experience cognitive deficit? I definitely need medication (which I shall have to find the funds to buy them once working for your goodselves) because without my gastric medication, or indeed spasms meds Id projectile vomit all over any work and I dont think you would be very happy.

Sometimes I jerk uncontrollably without warning, so need plenty of space in my proposed office environment. Also my voice is sometimes affected as is my swallowing (another effect of nerve damage/bloomin annoying), so if I suddenly and inexplicably sound hoarse, look grey and hold my chest, would these facts confirm my worth is greater than most and there are still bits I can do? After all there is a disability discrimination law about to be passed so you have to take me and I can do lots?

In summarising, I would be an asset to your company in more ways than one plus you have an obligation to employ me now disability discrimination laws are about to be passed. If not suitable for the above position can you please find me one cos Im damned if I know what I can do besides smile at the thought (:o)

I await your reply,

Yours sincerely

So, my fourth injection was yesterday evening.

The DH decided that he was well curious about ‘ my gadget’ aka the RebiSmart. So at 7.30 pm ,after the boys had been put to bed ,and after I had made him his usual cup of tea. We got to the jagging

I showed him what to do and he did it. He then looked at me and said “Is that it?” I  just laughed at him because my reaction was the same the first time that I did it. I have no idea what he was expecting but from my own point of view I was expecting some sort of reaction?

I found out the other evening that the higher dose Rebif (what I am currently on) costs £15,000 per year.. Ouch. LDN costs £180 a year , go figure.

I hate being on it, I hate the way it makes me feel. For the past few years, I have had a ‘low grade’ hum that runs throughout my body. It doesn’t get in the way and it certainly causes me no pain-it is just ‘there’.

Anyhow, last Tuesday , the day after my first injection I awoke to discover, much to my astonishment may I add, that it was gone.

Gone as in vanished, no longer present. I did my usual trick of convincing myself that it was a coincidence or even a placebo effect but guess what? On Sunday it had returned with a vengeance.

Friday was the last day of weekly jabs and Sunday was the 2nd day free from Rebif in my system. I was also horribly lethargic and sluggish that day..

I jagged yesterday evening and lo and behold ? It is gone and my energy levels have gone back up. Put it this way, last Summer during my bout of ON , the DH bought me a rollator (from Argos! -£115) My balance was non existent and well, I was seeing triple so independent movement for me was a serious no-no. I had to use it on Sunday/Monday because I had the ‘concrete boots’ back on..

Today? All good and I’m back to ‘furniture walking’ ie reaching out to walls and furniture to help me stabilize a tad.

That is exactly why I was reluctant to start on DMD’s. I was coping by myself, I had good days and not so good days but overall I was doing my own thing.Drug Free.

The Big Pharm has now got my body hooked on this drug, and it probably won’t be able to cope if I do come off it.

Thats seriously crap.

I did have a it og a laugh this evening though. A fellow MS’er who is PPMS (Primary Progressive MS) and is a wheelchair user was moved onto ESA? He had to go for an assessment and the placed him in a work category which means hey think his condition will improve within Six Months.

That is fucking hilarious. But as he says ” There must be plenty of job opportunities for a cripple with one hand who can use a laptop when lying down”

Rock on the British!

Time to switch the ringer back on the phone.. I have had to knocked off since last Tuesday mainly because of that damn MS Nurse.She has rung me about three times per day since I cancelled the appointment, She doesn’t give up does she?

I guess the ringer will go back on and I will have to deal.Somehow.

Phfft.

I am totally loving that youngster Greyson Chance? What a voice for a twelve year old-never bother with his piano skills. Totally insane. I recorded his version of ‘Paparazzi’ I’m not a Lady Gaga fan at all but his version is fantastic. He is still a child and yes, there are gaps in his vocal ability BUT he is 12 years old! That is what is so amazing about the kid. He is going places , most definitely.

Not much happening at Temporal HQ,the two boys are at home and being the wild parent type that I am I (and DH) actually keep them amused as a family rather than kick them to  the street or ignore them. People have kids then forget that they are children who need interaction and fun time etc. We don’t just knock on the telly and leave them to it either.

Maybe because our boys are normal children without learning or behavioural problems it is easier? I should have deferred the elder boy from starting Year One anyways as he doesn’t learn anything! I taught him to read and write ,he can count to 500 before he gets bored (both in singles and multiples) and he doesn’t turned five until June. The three year old can write his first name and also has excellent number/letter recognition, so he is well on his way.

Oh yeah DS 1 actually won pupil of the week again last week! He came in the front door and the red badge that is given to that student was smack in the middle of his shirt! I did sort of cringe when I saw it, because he has already been awarded it four times! I suppose it could be worse right?

I didn’t top myself,sorry to disappoint y’all and such but there you go. I am sorry for getting your hopes up and all that stuff!

I blew the Rebif appointment off anyway. I told the answer machine that I had a cold coming on and I didn’t feel up to it, both of which are entirely true,one slightly more than the other as it transpires but there you have it.

Work has been progressing nicely with a steady stream of opportunities trickling into my mailbox, unfortunately none of the big guns but nothing smaller than $150 a pop which is fine. It all adds up at the end of the day.Working as a freelance is unpredictable but I have never pulled less than $300 a month and that was in the early days( with less domains) which was the main reason for me to pull more domains into the fold. The more ‘popular’ the site, the more traffic you get, the more the advertisers see , the more opps you get. It is a very simple process. Although to juggle that you do need multiple, well seen sites to play with it.

The homeless people of the WWW need not apply, that meaning blog-spot , non domain type of stuff. Nasty that blog spot. I have no real clue as to why it is so popular. Any of the ‘free space’ out there is nasty with limited space and capabilities, domains are relatively cheap from $3.99 onwards depending on the extension and space is dirt cheap to buy. I have 12 domains all residing on one account and I pay £30 a year ,for all the unlimited features and that is from a reliable UK host.

FTP is simple and easy to use. Actually so is HTML ,php etc.

Even a UKS user could use it. Then again probably not.

Some people are just stupid that it defies logic. I am talking about message boards-what is it with herds of people  all jumping on the bandwagon just because one person says something and the rest of them all go ” Baaa”

EDIT I should be working right now but I keep getting distracted by the idiots on UKS-Yes you are thick in every conceivable way-a special shout out goes to Romi and Baby-Freckles (real imagination used there girls) who seem to be intent on keeping the thread going, even after it was explained that it was a windup.Yes they are dreadfully thick and seriously anal retentive , do avoid them if you head over

Actually just avoid UKS in general becausethat seems to be a quite commonplace over there

Grow a brain for chriss sakes!

The shopping thing is going well, I haven’t bought any stash in about ten/eleven days now. It was difficult to get out of the habit for the first three days or so but once I got past that time frame I have found it pretty easy. It doesn’t bother me anymore to be honest! I haven’t made anything because I can’t find any ink pads-I know I have about six of them , but where I’ve stashed them who knows?

I finished the first book in the J.R Ward series ‘Dark Lover’ and I have to say I’m pretty impressed so far! It has been a long time since a vampire series has grabbed me but the short and curlies but J.R Ward has done just that! I only paid £3.50 for each of them and that included free P &P. It is from an eBay seller and she is good. Very good! Brand new books pop through the letterbox the day after ordering! I was looking for some early Jack Kerley, which she did have in stock and I did purchase, and that is how I found her. She does carry the rest of the series ,so I will pick them up later in the week. They retail for nearly £6 each on Amazon,so that was a lucky little find if I do say so myself!

I wasn’t concerned before.. It was a nice added bonus and something that made MS worthwhile in my opinion! I’ve had the crap sides ,and I’m all up to date in that respect.. I watched my cousin, who also has MS, lose around 8 stone and I was like ” cool,why can’t that happen to me!” I have always been curvy, always and it has honestly never bothered me.

I know overweight people always say that, but honestly and truthfully, it never bothered me in the slightest! I was content in my own skin .

Last June I started losing weight, I was going through horrendous relapses so I did not take any notice- I did have other things to worry about at the time. So by September I had lost five stone, I don’t know how exactly and I don’t remember ever even giving it a second thought. It just ‘happened’ I honestly have no ways or words to describe it, it did ‘ Just Happen’. I hadn’t left the house in about three weeks and then the day I did , I met a neighbour and she was ” Oh My God! look at you!”  I think it was then that I realised what exactly had happened.

We were heading to Dunelm Mill and we took the elevator tp to the household department. I didn’t recognise myself, and I certainly did not like what I saw looking back me.

I weighed myself today, something that I haven’t done in about four months? As of today I am nine stone three pounds. I think I want to cry actually. It’s not me, I don’t know who she is exactly but it isn’t me. I am me on the inside- I still ‘feel’ like me but on the outside? That isn’t me.

I lost my butt, my thighs, my boobs- My sticky out bits that a female is supposed to have.. A size UK 10 is hanging off me at the moment. I honestly never though that being ‘ one of the skinnies’ would be so horrible.

For the first timein my life- I hate myself.

I’m feeling a little better , I am far from being 100% but I do feel a trillion times better than yesterday.

I have been on near constant chuck-ups since about August 16th ? It started out with a mouthful of bile then it just literally exploded! I went into the Doctors today and he thought  looked that I okay considering, but he did ask me when I had my last bowel movement.

Okay, this is probably a bit TMI but because of the sickness the last thing on my mind was sitting upright for five minutes or so, and besides I had more important plans for the toilet ie throwing up in it!

I haven’t been eating all that great because I was feeling a little rough around the edges ,so I attributed my lack of erm poops to that. He reckoned I was constipated. I didn’t. But he sent me away with a script for some Senokot tablets.

I did take two of them at around 1pm after we arrived home and within an hour I was shitting brown bullets. Go figure.

I still feel a bit yuk and I have had four dumps since then (and I can feel another getting ready to blow) but there you go- I was full of it ! and did I need to see a Doctor to tel me that ?

Rhetorical question okay? or then again maybe not.