Lead up to my MS diagnosis

I was working nights as a nurse, looking after a little boy with so many problems. I noticed that I was having difficulty reading. I made an appointment to have my eyes tested. Then I had a day off and went out with a friend and his Mum,she was in her 80’and had a bad heart, she had more energy than me! Then I was dribbling when drinking out of a can of coke, thought it must be the can. Then I was brushing my hair and noticed that the left side of my face had dropped. I thought I had a touch of Bells Palsy.

I went into work mentioned it to the sister who said that I should go to the admission unit, I will when the work is done and the ward is quieter. So off I went, luckily I was seen by a registrar who picked up on my jerky eye movements. I was told I would need an MRI scan, when do I go? Not sure but I am admitting you now. You can’t I’m working, you are going up to a ward now. Only thing that was going through my head was that I had no knickers on lol.

It was strange being on the other side, and it was August when the new doctors start and the ones who have been working for 6months get promoted. So this newly promoted Dr comes into my room and doesn’t even speak to me,but starts to tell his junior how I am feeling. I ask how he knows this, because I’m a doctor! You may well be but I’m the patient you are saying this about and you haven’t had the grace to even acknowledge me yet. Maybe not a good start.

I went for my MRI then got my notes to read, like me they thought it was either a brain tumour or MS. I knew nothing about MS other than you ended up in a wheelchair and dependent upon others. If it was a tumour they could cut it out just like they had my cancer in 1986.

I then had the lumbar puncture well my fav Dr tried to do it for over an hour, during which he told me I had MS. he asked why I was upset!!! you’ve just told me I have MS, its not that bad he says. Then I am told he can’t do the lumbar puncture as I’m to fat. Great bedside manner not! Next day lumbar puncture done in 10 min!

ThenI get seen by the consultant who asks, why there was a wheelchair next to my bed. The ward was on the 7 the floor of a big hospital. So I can get out to see my dog who is missing me. He thought I was just going to give up.

Afterwards I got no real support apart from being told about an MS physio group. My boyfriend at the time told me I would need to get an electric wheelchair as he wasn’t going to push me. All he would have had to do would be put his belly on the chair he was about 24st.

There was a lot going on in my life at this time, my house was going to be repossessed as I had been trying to be part of a group of what I thought were friends, only I was being used. They all disappeared when I was made homeless. I also was suffering with a very bad back taking Pethidine which had little effect. I found kennels for my Rottweiler who was my only and best friend and I ended up in the YMCA. Not a nice place to be but it was a roof over my head. I also lost my job due to ill health,then had back surgery.

After about 9 months I got a ground floor flat with a bit of a garden,great for the dog. The back surgery didn’t work so eventually I was told to go home and stay on bed rest, I live on my own how am I supposed to manage? That’s your problem. My uncle who was in his 70’s came to help me he was great.

I wanted someone to share my life with so tried an ad in the paper then every morning at tea break, I had a friend of my aunts doing work on the flat,we would go through the replys. I had decided that I needed to look for someone to help me look after me. I didn’t find anyone.

 

 

Frustration

I’m  I the only 1 who really dispares of society today. Everyone just has to put ticks in boxes, can’t think outside of the box.

My Mum just recently moved into full time care, so I phoned DWP to tell them about her change of address. As I was not her and they didn’t have a copy of the POA registration,  I  couldn’t do it. She is very close to the end of her life we are just waiting for the phone call. So do I make the effort to go to the job centre to prove POA to them or say sod them they can now wait till the end of her life. Will I have to prove POA to tell them when she dies!!

I also had a similar situation when I was put forward for counciling, I was asked to answer the questions 1st was about wheither I was employed full time, part time, homemaker or retired. I’m none of the above I’m disabled which is one of the reasons for the counciling. Wel just chose 1. I thought the idea of counciling wa to tell the truth. Great start folks. We are getting strangled by red tape and people who follow guidelines and don’t think for themselves.

 

 

Proving it to me

Yesterday was a difficult day, I always have been someone who reacts rather than thinks to situations. Hubby doesn’t cope with stress and has been under a lot since my Mum moved down near us in Feb 2013. Now she has gone into care we are having to clear her flat, that should be he is having to as I can’t do very much. 

So yesterday he decided to alter one of her old cupboards to fit in our bathroom, he hates DIY at the best of times but wants to save us money by reusing stuff. He had to do it outside and it was cold ( he hates being cold ) and the wind was bitter, needless to say it didn’t go well. He very soon was cussing and swearing, he has a very quick temper ( red head ). I wasn’t having a good day pain level to high and getting distressed by the dog upstairs whining. Hubby’s mood just made me feel worse I hate to see him like that and try in my own way to make life easier for him. We were taking my Mum and our friend to lunch so when he then forgot something as we were getting into the van, his memory has gotten awful mainly due to stress GP and I think. When he went to shut the side door of the van it felt like he was going to take it off it’s hinges.

Therefore my mood had gone right down, pain level had gone as high as Everest, was thinking I would have to go to bed when we got home. Didn’t want to do that as it rarely helps unless I get chatting on twitter. Then somehow we started to pass comments and make quips, which we do a lot, this made me think about something else and I suddenly felt so much better. I have been telling people this for a while but this was like a slap in the face, do it not just say it.

When we got home I said that we would be buying a cabinet life is too short for the grief. I did cheat and do it whilst our friend my sugar daddy was hear. Had already confirmed what I knew that he would always bail us out.

Now all I have to do is try to get hubby to stop worrying about things, getting stressed and pissed off. Simple really.

Slap The Slaphead – The Iain Duncan Smith Campaign

action pod

Everyone knows that Iain Duncan Smith is a massively repellent, odious, snivelling little gonad of a man. He’s sent thousands to their deaths with his insidious ATOS Back to Work schemes, which were deemed not fit for purpose years ago, yet still continue!

Although we don’t advocate violence, we would like to encourage readers if they get the opportunity to encounter Mr Duncan Smith to give him a light tap on the forehead, by way of reminding his that his policies have led to thousands of deaths. Who knows, it might even get his brain working and he could rethink his policies?!

If you can get a photo, please post it here, and we will arrange some kind of small reward. So there you go – get slapping the slaphead!

If you want to do more, there are various petitions against his heinous policies online, such as this one here:…

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Frustrations of these days

I’m I the only one who gets really frustrated at the way things are done these days. 1 example I got a Samsung tab 3 with a phone contract in January this year. I had a shock when my first bill came in with £18 extra plus vat on the bill. I phoned the company and was told my phone tells me that picture messages cost more, but I have a tablet not a phone so it doesn’t. 

My tablet also freezes up periodically and no longer conects to my laptop, so I took it to shop where they did a factory reset. It didn’t freeze again that day, but still no communication with laptop. So then took it back to shop where I got it, girl there had no idea what to do except go to PC world to there know how to dept and ask them, why I got it from EE shop. Or send it back, but I need my phone as mum in care and dealing with social services plus if I go out in wheelchair on own need to be able to get help if needed. They do a loan phone but didn’t have any?? They are a phone shop. So instead of her ringing other shop on other floor of shopping centre I had to go there. Yet again no loan phones and like me when I tried to phone 1 of their shops no answer or answerphone full. So now I have to try another branch to see if they have a phone.

No one communicates anymore and only seems to do the bare minimum.