My Day

My Day didn’t start so well. I was aware of feeling cold on my shoulders and arms, this I have had on other parts of my body before. They were warm to the touch but my brain said they were cold. I moved a little so hubby then cuddled in closer. Suddenly I was really hot, and not just cause my gorgeous man was so close 😄.

Then the pain and my bladder said it was time to get up 😔. So I got up and started getting hubby’s coffee on, I love the smell but hate the taste. We had breakfast, me wearing my dark glasses as always, but even they weren’t helping much this morning. I tried an eye baths and then some drops, neither helped. I couldn’t really say I’m staying here as we had an appointment this morning with the tax people.

So after breakfast we head off, via the local petrol station, not to buy fuel but so hubby could turn around as he had forgotten we needed to go to the post office. I had reminded him 5 mins before, but his memory is very poor nowadays.

As usual he goes to post office as it’s it’s impossible to park outside, but so many do and cause chaos, we try to be more considerate. My eyes were so sore and burning, so I tried more eye drops. Then off to our appointment via a couple of shops. On the journey I kept my eyes closed as it hurt when they were open.20170731_114408

We drove for about 40 min then I had to open them to be navigator lol. We went and got some oil for hubby’s beloved tractors gearbox.

Next stop was to see if now the main holiday season has started I could find some women’s sandals that would fit me. I was in luck and managed to buy 2 pairs.20190430_15192920190430_151902

We then headed off to our appointment, as we got near hubby asked if I would be ok to walk from post office which is under office we needed to go to, or just up on side of road. Different post office 😊. I said that I should be fine to walk from post office but there were lots of cars parked up the road and would need my chair, which wouldn’t be a good idea on side of busy road where you are not really meant to park. Hubby had forgotten that I had said I might need chair, even though he put it in back of van, what memory, he never remembers forgetting anything. Luckily we parked by the post office.

We had 30 min so went to look for a drink, only no cafes open in shopping area we were so had to go for a little walk 🙁. On way back there is a slope up to the offices and shops, so I suggested that hubby should push me up the slope. No he says you need a tractor for that job and it’s at home.

Appointment was problematical, the tax advisor could get onto the system to get our files up, technology is great, when it works 😅. So we arranged a different way of doing things and then when we were paying for the service I asked if she would prefer cash to a card, ” I’m a tax advisor, I have to declare it”. Only me would ask questions like this lol.

We then decided to go for some lunch, fresh fish as we were at the coast. So we went to a chirringito (bar/restaurant) on the beach. It was a bit chilly as the wind was coming straight off the sea, but the food was delicious.

Drive back home then and I went to go do some beading outside, hubby disappeared in garden. We had done first test on water in pool this morning and it was looking better after the treatment we put in. So after a while I was getting hot so thought why not let’s try it. I did go in the sea at the weekend. It did take a bit of time to get down the steps, I should have just jumped in 😄. I got to the bottom of the steps and then just went for a swim. It was coolish, but not cold enough to drop my core temperature to much. I then decided to get my lilo out, and spent a half hour just floating around till the wind picked up. I then sat in sun to dry off, much easier way of drying myself. 

I returned to beading but had a moan to hubby that I needed a titectomy. No way he says, but only the left one as it gets in the way. As usual I then got comments about them not being big enough.

What started as a shite day turned out to be a really good day, my mood was much improved, my eyes improved a bit and I was busy so pain signals not getting through so much.

Hubby and I try to take life as it comes and to laugh at life as much as possible.

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7 Ways to Combat Stress

CUPID OR CATS

We all get a little stressed every now and then. A little stress is perfectly normal but if you find yourself getting stressed quite frequently, then you need to consider the impact this can have on your health. Excessive stress can cause numerous problems for your physical and mental health. For those of you familiar with my blog, you might know that I have issues with anxiety myself. I’ve made a concerted effort over the last year to try and manage my stress more effectively so I thought I would share my tips and tricks with you all.


1. Be Mindful

Mindfulness is the process of learning to live in the now instead of fixating on the past or the future. It involves focusing deeply on your actions and surroundings in the present moment. We often worry about things we cannot change and things that are beyond our control. Practicing…

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Why I want disabled facilities standards

Why my upset at Standards of Disabled Facilities started.

In 1994 my soon to be husband an I spent a whole afternoon booking our honeymoon. This may seem excessive to some but I have Multiple Sclerosis and have used a wheelchair, to varing degrees since 1993. We wanted to go to Luxor. One hotel was being suggested to us, we even spoke to another member of staff who had been to said hotel, she said it was definitely suitable and we would enjoy it. So we booked a ground floor room with a double bed.
So we arrive in Luxor and get dropped off by the bus. Only to face a 500m walk up a sandy track with every shop keeper trying to get us in their shops. Plus we had luggage and a manual wheelchair to push. On arrival at the hotel reception there were 5 steps up to it, I decided I didn’t need to go in. On past the dining room again 5 steps. My diet starting sooner than I thought. Then around to the bedroom, you guessed 5 steps, they were very narrow so impossible with a chair, luckily I managed to get up the steps with help. In the room 2 single beds, so we phoned reception, someobe came and pushed them together, double bed seemingly. We tried to enjoy ourselves, but the stress built up so we asked if there was anywhere we could go and get in using a wheelchair. There are 2 places, Novatel, you would have to use the back entrance though. Oh in and out with the rubbish I say. It’s not like that I get told. I then asked if she had had to do it, no, then don’t talk about what you don’t know about. Then we were told aboyt the Hilton, it would be another £200 for the rest of holiday. We said yes straight away and promptly moved.
The Hilton was wonderful lifts I could get into only a couple of steps into one restaurant in the grounds. Unfortunately though buy now the damage had been done, my M.S. started to play up so I needed to see a Dr.
I those days not many people anywhere south of UK knew much about M.S. so he decided to send me home. Then i had to deal with the insurance company, who wanted me to phone my GP and tell him it was OK to talk about my medical condition. When I explained that I was in bed in a hotel from where the free call to them had cost me £16.00. I said that I thought he knew me well enough to be able to tell them what they needed. I was then sent home after only 1 week of my honeymoon, and straight into hospital for steroids.
A couple of years later we had a week in a timeshare complex. We even bought as we felt at least that way we knew what standard of accommodation to expect. Then as the years progressed and I needed to be in a wheelchair more and more, I became more and more frustrated with not being able to be my usual spontaneous self and just go somewhere, as there was no guarantee that I would be able to get in when there. Most of the time I would just accept and get on with things, but over the last few years it has really got to me, now I’m really pi**ed off.
We decided to go to Spain on holiday using the ferry instead of flying. So I booked accommodation through Booking.com. All places were listed as having disabled facilities, this might mean they have a lift, not one you can get a wheelchair in or find until you have struggled up and down the stairs, as happened this year.
Or like in my town where they have an action group which have given various places approval as having disabled facilities, only again there is no way you can get into these places in a wheelchair. When I went to one of their meetings the fault was mine as my electric wheelchair was so big!! They were so defensive then told me that they were going to reassess the places. I was asked to help, I’m still waiting for them to get in touch. I was told by a disabled rights group that if I was having trouble with accessibility to write to every business stating the problems. I live in a small town and felt that all this would achieve would be to make me very unpopular.
We then were asked to go to a holiday presentation (timeshare). We would get 3 nights away so thought why not. I phoned to check that we would have room to park our large van. I was told that this would be no problem, I also told them that I am in a wheelchair. We get there only to find that there were 7-8 steps up to the hotel, very beautiful marble, but still steps. We were told that there was a way in and someone can to show us. My husband went to look and disputed that you would do it in a wheelchair. We’ve had big wheelchair in this way before he was told. So we get me in chair out of the van and I attempt to get in. It was impossible, even in a manual chair my husband would have to have been manhandling me around as there were 2 90 degree turns to go back on yourself. The duty manager was talking about a ramp for the stairs, our presentation was in 20 mins and at most would last an hour, some handyman doing that. He wasn’t impressed when I told him he would lose 2 parking spaces because otherwise the ramp would be to steep. I then asked if I would be able to get around inside and fit in the lift. Oh there is a step and not sure about the lift. So they found us another hotel only this one’s disabled room only had a bath. Strange but I don’t do baths, could this be because my legs don’t work to well. I am also doublely incontinent, but though we’ll manage. Next hotel at least had ramps, I didnt go in as we now were pressed for time and if we were late for the presentation we would lose our deposit. Got to the presentation and were greeted by someone hanging over the stairs, meet you on the second floor, we were told. Problem wheelchair didn’t fit in the lift. I was then made to feel like I was doing all of this just to be awkward and that I go around in an £7000.00 wheelchair just to be awkward. Things went from bad to worse until I was adked if I was that disabled how did I get in a car. I don’t we have a big van with a lift and I travel in my wheelchair. I wad so annoyed and upset.
We thought we might as well make use of the hotell and stay for a break. Only I couldn’t get into any of the rooms in the hotel. I also couldn’t get into the disabled toilet, managed up the ramp fine just couldn’t get in the door. I spent ages crying on the way home.
Then had to go to see Neurologist and had difficulty getting into the disabled toilet, in my manual chair this time. Next time I was at same hospital asked consultant if there was a toilet that i could get into. He had no idea. Then at another hospital in area went to use disabled toilet, which I’d managed in in the past, only to find that now it’s also used for baby changing, so had another large bin in it. Therefore I could get chair but would have to carefully reverse out, in but no room for me to be manovered out of chair onto toilet.
The timeshare accommodation fell down this year to. We went to Spain for a 3 week break, had to drive down through France and Spain. Staying in hotels with disabled facilities, supposedly. Get to the timeshare resort only to find they don’t have a disabled apartment. I had checked twice as I hadn’t seen anything about a disabled apartment. We then had to find alternative accommodation.
It might be me but I am finding all of this so stressful and very upseting. My husband doesn’t seem to understand but he can just walk into a toilet when he needs to go.
Please sign my petitionhttps://www.change.org/p/david-cameron-mp-bring-in-standards-for-disabled-facilities?recruiter=80644317&utm_campaign=twitter_link&utm_medium=twitter&utm_source=share_petition

A Benefit Claimant’s Open Letter To David Cameron

It is disgusting how people are treated these days by those in authority. I thought social services were supposed to care about people, not any more it seems. Everyone is being encouraged to become so selfish as well and think only of themselves. Not a good thing for society.

Same Difference

Please share widely.

One year on, the misery continues for group member of Respect For the Unemployed & Benefit Claimants

An ‘Open Letter’ to David Cameron10 Downing Street
cc Ed Miliband  & Natascha Engel MP

I’m writing in a desperate attempt to be heard regarding the situation I find myself in. On the 1st June 2013 my husband Andrew Siddall was killed in an awful road accident along with his best friend. Another biker from Sheffield was also killed in the same accident.

Before his death my husband had been receiving Disability Benefits. In his younger days my husband worked at Bolsover Colliery, after leaving school he went on to work as a builder / roofer. Taking part in the construction of Carsington reservoir dam. He retired early on health grounds. He was a member of Derbyshire Bikers.

I buried my husband on Thursday…

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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.