Tag Archives: MS

DWP – The true welfare reform needed

12 Apr

A couple of weeks ago just after my operation I hit bottom.

Trying to absorb the news that incompetent Gynaecologists had altered my family tree, I was also waiting for my second PIP assessment outcome.  This came fairly quickly after my assessment and I knew right from go, that the assessor was very poor at her job and I was left feeling very upset and angry.  I, with the help of my husband, wrote a long letter explaining why I needed a reconsideration and pointed out facts about my inadequate assessment and that a decision could not possibly be reached with the what could only have been a skeleton report.

I received a phone call from the DWP which surprised me as I more than covered everything in my letter.  This phone call was a horrendous experience, whereby I was bulled for an hour.  She was horrid, not abusive but just down right defending the report that was clearly incorrect.  I was sobbing by the end of it, I had lost it, I was a complete mess.  Then it hit me, just how much I had struggled with something I would have stood up to.  I was being treated terribly, she knew it and I bloody knew it and for the first time, I truly saw myself as a vulnerable adult.

I telephoned the call centre back trying to calm down but as soon as I started to speak, the sobbing wreck returned and this woman told me that the call had not been logged yet and could I have someone with me next time as it is hard to get information across to someone so upset, oh and what was I upset about??  Well, I thought, pick something from the list I currently have going.

The DWP recruit from Psychopaths/Sociopaths Ltd because they really do not react to genuine upset distressed people with real problems.  It isn’t normal.

The suicide rate has gone up among sick/disabled people and who is accountable for this?  DWP, Atos and the other company that I cannot recall.  Are they being prosecuted for murder? Are they heck.  I say murder because there is intention there, you cannot act like they do, implement procedures like they have and then tell me there is no intention.  They knew what was going to happen under this Government.  The country knows what has happened but has chosen to turn a blind eye.  God forbid we crack down on tax avoidance or let 85% of the population who, when took part in a questionnaire I saw the results of recently, wouldn’t mind being taxed a little more so we can keep better public services and leave genuine benefit claimants alone.

Welfare needed reforming yes, but not to this level and certainly not to demonise everyone in society’s eyes.  We take up so little of the % welfare budget I don’t know how they have justified it to the public.

DWP are not fit for purpose and they should be investigated.

I have never applied for ESA even though we need it.  To be honest it scares me, the PIP process is painful enough.  I would get more working and I would much much rather be working, so where they get this idea that sick people choose this life is beyond me.

DWP – if you take my welfare assistance away from me, can you take the disease as well?  The assessor I saw seemed pretty convinced she had cured me the minute I opened the door (one of the reasons they used against me).  Next time I will make you assess me through the letter box, you utter bastards.

I am very angry and very very concerned about everyone that needs the help of our welfare system.  I don’t just think of myself; when I was found by my husband as a sobbing heap, I at least had him to comfort me, to calm me down to go through everything with me.  Then I imagined that scenario without anyone – no need to question how or why the suicide rate has gone up amongst our group is there??

The Operation

26 Feb

I am petrified at the moment.  Why?  I have my first general anaesthetic next month and it scares me.

I have had an operation before but it was a spinal for my emergency C-section for my son and yes it was scary because it was unexpected and like a scene out of ER minus George Clooney (sob) but I was ecstatically happy to be having my baby.

When I was 11, my periods started and unfortunately on my maternal side runs a rather unfortunate trait of having periods than resemble the first stages of labour.  I have vivid memories of my mum in absolute agony, with vomiting and I was thinking, I do not like periods and I hope mine is a long way off starting!  IT had other ideas and arrived, in my opinion, too young.  I was in agony every month and became best friends with a hot water bottle and ibuprofen.  I have memories of rolling around in pain with my mum trying to encourage me to have something very small to eat as ‘you shouldn’t take ibuprofen on an empty stomach’, so there I was, trying to down some biscuits, a banana, anything so I could take the magic pills.  Problem was, the tablets would only work well for a couple of hours until the effects started to ware off and I would be writhing around in pain again until I could take the next dose.

This went on an on and like many other girls was told to get on with it and take the contraceptive pill to help with the pain.  So I did and they did absolutely nothing, the only positive was I knew exactly when I would come on so could plan accurately when I would be ailing.

In my late teens, I ended up in a private consultation room at a very posh hospital covered on my step-dads insurance at the time.  The consultant was very nice but wasn’t much use and nothing much happened.

Fast forward to last year, I saw a very lovely surgeon who informed me after speaking with him for no more than 5 minutes that he was sure I had Endometriosis.  Now, this is where I am back to what was my GP thinking?  My mum was told she had endometriosis but managed to have 2 children, it is just me that has secondary infertility.  So, why wasn’t this investigated sooner?  The surgeon said that no one should have very painful periods, it isn’t normal and shouldn’t be left.  The clue for all Doctors is when the pill doesn’t work.  He also said that if the pill hasn’t helped then neither will HRT when the menopause phase hits and I am sure that won’t be long.

So, he will be doing a Laparoscopy to diagnose what he thinks is going on so I am keeping an open mind.  I am very keen to find out if he locates my right ovary, as it appears to have gone missing!!

I know that what with my MS and my thyroid now playing up even more since starting Avonex, plus my age we will never have a much wanted second child.  A big part of me wants to ask the surgeon not to tell me if what he finds has prevented a pregnancy and that it could have been fixed if found earlier.  I will also feel very upset as I was under investigation for secondary infertility, so the question would be, why now?  This information would have been very useful 5 years ago!!  As adults, me and my husband struggle sometimes, but it is our son, he has been asking for a brother or sister for years and it is heart breaking trying to explain why he is on his own.  We know he will understand one day.

This is a downer post I know, but when I was young, I believed my GP had my best interests at heart and was there to help and protect my health.  I was never referred to anyone about my issues and now I am sitting here with MS, possible Endometriosis and thyroid issues that were actually diagnosed by chance because my GP was away and I saw a quick thinking/acting Locum (luckily).

GPs are great don’t get me wrong but they make the huge mistake of not accepting when they have reached the end of their knowledge and refuse to refer to a consultant who can actually help.  Going on for years and years, making a patient suffer just because they hope the problem will go away because they are sure it is all in the mind, is just not becoming of their intelligence or their patients.

I was in limboland for health problems for over 20 years because of me.  I tried but failed rather well at not speaking up louder and more assertively.  It is not healthy to blame myself but I allowed Doctors to treat me like I was invisible.  Thank goodness that every consultant I have seen have been nothing short of fantastic and have taken away that feeling of  ‘I am mad’ because the GP told me so.

Adjusting

12 Mar

Well it had to happen eventually, I burst into tears during my Nurse appointment this morning.  She was lovely (always is).  I tried to explain it as best I could in that I am finding adjusting to my label really hard.  I am no different to what I was 10, 15, 20 years ago albeit a few newish symptoms over the last 8 years that helped seal the deal.  Unfortunately now that I know what is wrong, so does everyone else.  No one believed that I was genuinely unwell for all those years, treated like a freak literally and by people that I had wrongly assumed wouldn’t.  So, now I have my diagnosis, rather than just saying, oh good we have a name for what has been happening and it doesn’t change anything as you have been ill for years, people are choosing to slap me round the face with it at every opportunity.

I am 41, 42 in June, to me I have things I want to do still, things I was doing that have ground to a halt because certain people would rather slap me round the face with a label.  I am youngish person, lots of years left to contribute outside of my household.  Yes, I have had one dream cruelly taken from me, Vet Nursing, however, Counselling is a different matter.  I am halfway qualified, all I need is my 2 year Diploma.  At the end of year 3 I informed my teacher that due to finances, I would need a year out.  I was diagnosed in that time, since then, I contacted my teacher and explained my diagnosis and asked if she could give me a realistic outline of the course and what is involved so I could have a serious think and try to plan, get assistance to see me through.  What did I get?  Complete ignorance, not even a substandard response.  Nothing.  This from a Counsellor!  Me thinks not all of her issues have been dealt with.

This is my point, the whole 2.5 years of studying I did, I HAD MS!!  Good enough then I was, praised to hilt constantly.  Good student.  Now what am I?  A wannabee with a degenerative disease.  I reiterate, I was always that, we just didn’t know!!  I need and want people to get over themselves, it isn’t happening to them, it is me this is wrecking and I am dealing with it, please join me won’t you?

The only people who have been supportive and great are the Veterinary Surgery, going there is like my safe haven.  I am still me in their eyes and I feel like me too.

At the moment, I refuse point blank to assume the role of the MS label.  Yes I have it but it has been part of me for a bloody long time and I was plodding along then so why can’t I plod along now?

I have a son to inspire and a life to live.  It is not good to be sitting in a wheelchair in the future knowing that when you could do it you were stopped due to other peoples ridiculous perceptions.

I am Sam with MS but you are blah blah with a bad attitude!!  I am here, deal with it.

Still learning……

31 Jan

I am not doing the whole am I relapsing thing very well.

My appointment with the Neurologist went well on the 23rd December and I happened to mention that my left arm felt very sore and had restricted movement (couldn’t fully extend) and that had lasted a couple of weeks.  Nothing else was mentioned about that until I received the notes from the appointment I was shocked to see that he had noted my arm was a probable mild relapse.  Oh dear I thought, that means some things that have happened before I haven’t mentioned and any future events like now (altered sensations worse down left side) have not been brought to the attention of my Nurse.

Needless to say, I feel like a right womble!  Did anyone else have trouble deciphering between normal stuff and relapsing stuff?  I always feel pretty bad and because due to not being diagnosed for years I pushed through, so now, things have to be very bad and very obvious for me to alert family/Nurse etc.  This worries me, in fact the whole thing really as my Avonex treatment has been 8 months and to be honest I have when I think carefully been relapsing pretty consistently as before.  I must give it more time but the thought of being put on second line drugs scares me as the risks are greater.

Tomorrow marks the month of my diagnosis.  February will never be the same again.  My year Anniversary which seems weird as I had been living with MS for years!!  I know I am not alone in this either as it is so hard to diagnose.

MS is ruining my life slowly but my attitude will never be taken, I am a stubborn cow and I love life so (blows raspberry).  You have given me a beautiful gift though, the realities of life.  I feel stronger, more knowing than ever before.  It saddens me, even frightens me but I am sure the people in my life now want to be there and I love all of them.  I can let go of the pretenders.

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.

 

Identity

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.