Name change

13 Apr

Not sure if I like it but for now it is all I could think of.

I took my usual Monday afternoon Avonex injection and I feel like crap right now.  Some weeks are better than others but today isn’t a good one.  I have a love hate relationship with my drug of choice, I am so lucky to have any drug that is fighting it however little % effectiveness but I hate the way it makes me feel and the pre-injection anxiety.

Something that I need to get off my chest is the current theme among MS patients is this, if your MS doesn’t have progressive in the title, then you aren’t progressive.  I am very aware that MS can be more progressive in some people but I do take umbrage at the suggestion that relapse remitting is some sort of golden ticket in the MS world – it isn’t.  We all progress, if were weren’t, then why take disease modifying treatments?  Are they not taken to help slow progression?  Did someone miss that bit of information?  Why are the MS organisations not doing more to correct this?  This is playing right into DWPs hands (following on from yesterday).  During my assessment, she said oh you have RR like that means fine.  We have treatments therefore we are fine, right?  No, wrong.

I really don’t know from a general society point of view that the types of MS are helping us at all.  In a lot of ways I wished the types were behind closed doors for the medical professionals.

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??

Laparoscopy

11 Apr

The much dreaded operation happened on March 25th.  I was incredibly nervous and not just because of the operation itself.  My MS has given me the lovely dry retching episodes and this happens intensely when I am nervous.  I do have a remedy and that is to suck on a polo mint, simple but very effective.  Unfortunately, it is on the must not do list before an operation – yikes!!

Anyway, I managed it (not sure how), lots of very deep breathing and strange looks.  Many hours passed and I was starting to think they had forgotten about me as I was on the morning list.  It turns out that the first op took longer and the surgeon wanted to operate on an elderly lady first.  I didn’t mind and I hope they are both doing well.

My fear of being put under general anaesthetic was the issue and I can honestly say it was fine and I cannot believe I am saying that.  It was truly okay and not unpleasant or weird at all.

The shock came afterwards, the news that I did not have Endometriosis.  I was so thrilled, what great news.

It turns out that after my C-section, my body healed wrong and I formed adhesions between my uterus and omentum (the layer we have that covers our internal organs, like a curtain).  I have yet to find out exact details as I am due to see the surgeon next month.  The staff were a little awkward, not in a bad way, its just once they found out how much we had been through trying to conceive our second child, it became apparent that this could have been the reason rather than the bollocks diagnosis of unexplained secondary infertility that so many couples get lumbered with.  It is utter crap in my opinion, pregnancy is a biological process, therefore if pregnancy does not happen there is a reason for it.

My surgeon is great, funny, lovely and I so wished I had met him 5/6 years ago.  I wasn’t investigated, i.e. referred to him or a colleague and it really isn’t fair on him to have to break the news that this operation could have helped us.

There is no guarantee of course but we will never know.

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.

Finally alone in the room with MS

29 Jan

I haven’t written an entry for this blog in a very long time.  There is a reason, one in which I honestly didn’t believe I would be writing about already.

April 2014 saw the turning point in my whole ill health drama.  I left the Vets.  Not by choice, there wasn’t a hells chance I would have chosen that and when I was diagnosed I swore to everyone that they would have to carry me out of there.  They very nearly did.

I remember my appointment at the Hospital with my lovely Nurse last year and suddenly bursting into tears as I struggled to suppress the thoughts that were upsetting me so much.  We talked everything through and she said that she had come to know me as a very determined person but in truth, the job was now getting too much and once I had made a decision, I would feel better.
She was right of course but it was so gut wrenchingly awful. The thought of not being able to no longer cope with a 3-4 hour Saturday morning job which was also my passion was unbearable but it was a harsh truth. MS had taken its final piece of what made me Sam, an individual, apart from being a wife, mother etc.

It is very important, in my opinion, to have something in your life that is yours, to treasure, that grounds you, gives you true you time.  My husband has his Astronomy and I have animals, the Vets especially.  Now, I am lucky in that I have pets, probably too many, as it can be very busy, but I need that weirdly.

I had to get my eldest cat Branston his booster today and since leaving, walking in there finds my heart shattering all over again.  It is painful, really painful, worse than anything MS can throw at me currently.  To say I am angry is an understatement and behind the anger (as it is a surface emotion) is fear, complete and utter fear.

I am 42, which isn’t old and I find myself on the scrap heap, completely lost as to what to do with myself.  Do I try to get the education I never received at the sorry state of a school I was sent to?  Try to finish my Counselling qualification that I have been pushed out of because I couldn’t possibly cope.  They forgot I had MS in the 3 years previously, tut tut (that was devastating and confusing), or do I just add to my ever growing collection of blankets and pyjamas and resign myself to this future?  I have to admit to subscribing to the Art of Knitting before my arms completely give up and they are trying very hard at this!!  I figured I could knit a square a week as a kind of project and then finally put together the squares to make, er, oops another blanket!

To end, I need to elaborate on the title of this post.  I have realised, that my little job was a distraction from my reality and future.  All the time I could go there, I could escape, look into the kennels, observe and care for any hospitalised pets.  Clean, help out with Nurse duties and just generally absorb a world where I forgot about me and the crap I drowned in all week.

Now that has been taken and I need to learn to swim, I need to learn to escape, find something so that I am not always alone in the room with MS.

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.