The importance of Integrity

21 Jan

It has been a while but I needed a break.  A lot has happened but the last 2 days has shaken me not because I am surprised but because it has actually happened.

My Mum has lost her integrity and probably did a long time ago, in fact the day she got married to my step father.  Unfortunately, when you find yourself young and from a broken home, you have to go along with your mum/dad’s choice of new partner and life.  Even as a child you know when they are making a mistake and I did.  She was making a cracker of a mistake and far worse than the first choice, I.e. my Dad.  Then, if that wasn’t bad enough, you find out that he has kids, horrible kids.  Seem fairly normal at first but then you realise they are self serving, self pitying, antagonistic little shits with enough baggage to rival an Airport, you bet I wanted to run.

i had made the wrong choice.  At age 6 my parents decided it would be a great idea to ask me that question all children should never be asked, ‘who do you want to live with?’  I was/am a Daddy’s girl but I knew my Dad had nowhere to go and I was scared.  My Mum I chose almost automatically but then who wouldn’t?  I was effing 6!!  Anyhoo, now, I am reaping that decision.

Since my MS diagnosis, my step family have literally walked in the opposite direction, proving what I always knew.  This leaves my mum stuck well and truly in the hole she dug for herself.  It is her Birthday very shortly and her wishes were for her to go out for a bite with me and my sister (half, we share our mum) our husbands and children.  My step dad as usual pipes up and has to make sure Huey and doey have to come along (his kids, 45 and 41).  Because of how I have been treated, I have retreated as I have no intention of being subjected to their behaviour, excuses and for it to be anything other than a celebratory birthday meal.  My mum has arranged to go out with just me, hubby and son the week after.

I will have a relationship with my Mum come hell or highwater.  I grew up without my Dad so I am under no circumstances growing old without my Mum.  

By stepping back, I am keeping the peace for my Mum, the same position I had as a little girl.  It is wrong to say nothing but the trouble it would cause is not worth it.  I have paid lip-service to my supposed family for all these years so what can it hurt?  Trouble is, now as adults it is all too clear how bad it is.  I knew the control level he had but to the point where my own mother cannot tell them what utter bastards they are being towards her own daughter then I now know what a smart insightful girl I was back then.

I was always worried about not being academic but thanks to MS it has shown me that what I have you just don’t learn from books.



Atos Assessment

1 Nov

The title, will in no doubt be reaching your life at some point. When it does, the fear will get you and all the reports and life story reports you read will add to the fear. I wanted to tell my experience of my assessment for PIP, replacement for DLA.

I was given a home visit for the only reason of Atos cancelling my appointment less than 24 hours notice and me needing my husband with me. He is a lecturer and there was no availability after the original date.

A new date for a home visit was set and I waited nervously for my female assessor to arrive. I was keeping everything crossed for a friendly woman, I was dreading the official type, you know the sort, hair and bra straps pulled too tight!! I got lucky, the assessor arrived and she was relaxed and friendly, yay! She sat down and explained she was a Nurse with many years experience on the wards and now worked for Atos.
The assessment was in basic terms a verbal version of the form you originally fill out upon application, so not too taxing (fatigue permitting!!). She wrote verbatim and read back for me to confirm.
She was thorough and appeared understanding and explained fatigue and how many people don’t understand it. She talked to me about my impending self catheterisation and said it would help but understood the apprehension. I was overall relieved at the end and was grateful she brought with her a calm and relaxed attitude.

I was, however, unprepared for one aspect of the assessment. My dog….
My dog Tim, lovely nutty boy that he is decided as a thank you for coming present, to take a big poo right next to her. This isn’t usual behaviour for him and luckily she was very understanding and has dogs, phew. I was very embarrassed.
Hope that didn’t go against me :/

In short, everyone’s experience is different I know but I wanted to post a positive assessment experience for those awaiting PIP. Of course, the most positive experience will be the result which I haven’t received yet!


1 Nov

I started thinking about this post a while ago but just couldn’t start it. I have been struggling with every aspect of my life for a couple of months and it has prevented me from posting. I was worried that readers would think, blimey she is miserable, I don’t want to read etc. but today, I realised that it may be of some comfort to someone else thinking and feeling similar things. I must stop thinking negatively about what is completely normal in my situation.

To start with, I feel since diagnosis my health has deteriorated quite a lot and that is frightening and frustrating. Emotionally, I barely recognise myself whilst trying to dig the same old me out every day from the pit that MS is creating.

My future? Well, what can I say about this? I want and need a future that vaguely represents the me before but I have been confused, upset and again frustrated as many doors close due to reality and uncertainty. Facing the facts is hard and it is made all the more difficult when you and no one else can tell you what may happen as part of the disease progression.

This has in a way always been the case as being in limbo for an extraordinary amount of time has left me battered, unsure, untrusting and frightened.

I am leaving this blog as titled at the moment because although out of diagnostic limboland I am far from being out of life limbo.

Emotional woes

26 Sep

I am becoming an annoying easily offended person.  Not with everything, just MS related.

The forum is full of members and posts that just seem to rub me up the wrong way and I cannot figure out what is really going on.  When I was an active counselling student, this would have made for very good criteria meeting homework but now I’m out of action, it is bothering me.

The posts aren’t personal to me so why am I finding myself tutting, rolling my eyes and not being able to help?  Is it that I’ve disappeared up my own backside and feel that unless you feel about MS the way I see it you are wrong?  No, that’s not me, I respect all views and how each individual person handles things.  Am I projecting my own denial?  May be, I just feel clueless about it all.  What I do know is I’m genuinely hacked off and really need to stop going on there.  I also miss Karen.

The last couple of weeks has seen two attempts at motivational, feel good posts.  Thought appreciated but even those have ticked me off!!  I hate being told, it could be worse and to view MS as something to think positive about.  Er, excuse me, I am a positive person, I get on with my life, I do everything everyday to make sure the house still runs as a youngish family that we are.  As for my Veterinary job, they will have to carry me out of there before I give up!

I refuse to live less able than I actually am just to make people feel better about my illness.  MS, serious isn’t it?  Well just you look and act more ill immediately so I can validate what I really think of you!  NO is my simple polite answer.  I live like this because I can. Yes it is bloody hard and inside I cry and scream so much my mum would break down if she knew the truth.  So in short I am positive through my actions not just because I can sit and write a pretty little sodding paragraph and get kudos from members that want an MS diagnosis (I will say it again, why?) and don’t know what way is up right now!!

Rant over.

Bladder retention

10 Sep

Oh dear, MS has a friend along for the ride.  I’m sitting here in a lot of discomfort which has been getting worse since last week.  My bladder is not working at all well and it is all to do with emptying.  Your bladder has two functions – storage and emptying and mine is having trouble emptying, all thanks to a poxy lesion on my spine no doubt!!

I saw my MS Nurse last week, lovely lady whom right at this moment is in severe danger of being kidnapped and brought to live here with me for constant reassurance and help.  HELP, I NEED HELP!!

You know, when I turned 40 last year, the usual niggles came up in my head that we all get when hitting that decade but never ever did I think I would be needing assistance to bloody wee.  It is soooooo depressing, for goodness sake, weeing is a basic human right!

I sat down with my Nurse and she asked me how I was (I find this genuinely hard to answer without sounding like a complete sarcastic bitch) and I then told her that my bladder seemed to be playing up more than usual.  I said I thought I was retaining urine as I was having to get up in the night and on a couple of occasions, the urge was there but the urine didnt flow.  She asked me to get a sample so she could check for infection.  That was clear thank goodness.  She then got out a bladder scan, a great little machine that measures if you have any urine still in your bladder.  She was surprised to find 108 mls still in there considering I had just been.

She said that normally they wait until you are retaining over 120 mls and there are a couple of medications they can try and then they start talking about self catheterisation.  This of course is made easier by the fact that the catheter looks just like a lipstick in your bag.  I don’t need to comment about that do I??  I have to monitor said naughty bladder for what feels like forever and let her know.  The appointment was last Wednesday and I will be emailing her tomorrow, I’ve had enough.

There is no way I can take anymore sitting on the toilet leaning over with hand on belly, rocking side to side, forward backward, my husband sitting with me, jumping up and down and finally coughing and trying to sneeze (yes I have considered taking pepper into the toilet to induce this) to get something anything out of my sphincter who has decided to clamp shut until I am fast asleep of course.

Lumbar Puncture

5 Sep

This is without a doubt the dreaded procedure about all this for me.  I thought I had gotten away with it as it is usually done pre-diagnosis.  I wasn’t to be this lucky but on the other hand, I am lucky to have a thorough Neuro.  He is an ‘every little detail’ consultant which can only be a good thing.

I turned up to the Hospital in the morning to have my bloods taken, unfortunately, due to circumstances, I had my son with me.  We then left and had to return in the afternoon.  My husband managed to get the afternoon off work and drove us to the Hospital.  He then went off to Bluewater with our son to try and get some school plimsoles ready for the new school year.

I knew where I was going as it was the same Ward as I had the bloods done luckily.  I waited for what felt like over half an hour but it probably wasn’t!  A nice Doctor came over, introduced himself and shook my hand, very polite.

We went into a separate room and explained what he was going to do and asked for my permission.  Once agreed, he went off to get supplies, that felt like ages too!  He returned and asked me to lay down on the bed with my back facing him and to curl up in the foetal position as best I could.  He explained this would help me to help him etc.  the worst part was the stinging sensation of the anaesthetic going in.  I did feel pain and whined out a bit as the needle, tube thingy went in and I’ve got no idea if that was me being a bit sensitive or he just happened to hit a nerve slightly.  Anyway, after that it didn’t hurt at all.

It was actually pretty boring as the fluid just drips out as the area isn’t pressurised like when they take blood.  At the end he showed me 3 tubes (like urine sample pots) with small amounts in each.  It was a very clear, crystal clear liquid.  He said a lot of people describe it as Gin colour.

I had to lay down for 15 minutes while he labelled the pots for the lab.  After that he made sure I was being collected and told me to lay flat for as much as possible in the next 24 hours.  This would help me avoid a bad headache that is associated with this procedure.  I went in armed with a bottle of Coke, as I had read lots of people on the forum mention about coke helping.  When I got home, I admit to finding it hard to lay flat the whole time, so I just reclined in the chair as much as possible but did have to lay down when my head started to hurt and it did often, when I sat up or stood up for too long.  My body sure did let me know when it needed to lie down.  I thought to myself, I’m sick of you, bloody body dictating to me all the time!!  Still must get used to it as MS is a bitch like that, a dictating,little bitch at that!

So, in short, the Lumbar Puncture is okay.  The thought of it is far worse than the reality and as long as you follow the instructions given, rest rest and more rest (and not for just 24 hours either, important) it is fine.

Get the popcorn in!!

21 Aug

Blimey, it’s kicking off on the newly diagnosed, pre-diagnosis section of the forum.

A new member is causing quite a stir but I am finding it rather entertaining and sad at the same time.  The very first post I admit to biting, politely mind you, and nothing came of it.  I explained I was very tired and very sensitive and I should have stayed away.

Anyhoo, the last week has seen posts that can be described as angry, paranoid, accusatory, threatening and very antagonistic.  I know I haven’t completed my counselling training but this person would make a good candidate for counselling.  This is what I find sad.  I can literally feel this person desperately trying to find an alternative diagnosis, grasping at any straw to change the outcome.  Irritating other members to within an inch of our lives, only to want support and answers to questions not even the best Neuro could answer.  They have zero social ability and I just am at a complete loss.  I am ashamed to say, I have read and ignored every post since my blip.

Karen would be so good in this situation as I believe her knowledge would have helped quash her irrational paranoid thinking.  This person wants us to put up with poor behaviour because of the suggestion we all have Lymes disease and should be tested immediately.  Er, news flash numb nuts, it is tested for as standard, or so I believe.

I hope they find peace soon, as I am worried about newbies having their nervous first posts hijacked with very unacceptable comments and own agenda swings at anyone brave enough to admit they work for the NHS!!

I am too tired for all this and at my age as well (rolls eyes, te he).  Talking of tired, what the hell am I playing at, it’s 11.15pm!!  Is that sirens I can hear, MS Police, ooh noo !!