Archive | April, 2015

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??


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.