Last night I was with friends and they were all telling me that they read my blog and I should keep it up. One friend Clare Collins says “you could do with a happy one” I have racked my brains all night and day and I think I found a happy story.

At christmas 2013 things were pretty bad. The mortgage company had put payments back to full rate. We had no money. I had a lot of issues with certain members of the family not helping or assisting with Debbie or even just taking her out for the day. They had become violent when I had asked for their help. I was ready to give up on everything. For some weird reason I didn’t and thought I would cut off from those people and try and come up with my own great plan.

We had been using an “Care” agency call Abbey for about a year and they had caused us loads of problems. The main one was they kept sending in new members of staff all the time. These people wouldn’t have any understanding of Debs situation her diet or medication. Also they wouldn’t know alarm codes. I had said when we took them on that it wouldn’t be good for Debbie to wake up to someone new stood over her.

The final straw came when I was shooting a wedding one Saturday night and I got a call from ADT alarms that the alarm on the house had gone off. I knew Debbie was on her own so I called her to find out what had happened. There was no answer but because I knew the time was about right for a carer call I telephoned Abbey they told me it couldn’t be one of the carers as they had the number. I said but your always setting it off not everyone has the number. She argued but I had to set off home to sort.

After 20 mins Debbie called me back very stressed. The carer had gone into the house and set the Alarm off didn’t know the code and couldn’t get it. Debbie was asleep and the alarm was going in the dark, this big Polish girl was stood over Debbie and scared her to death. Debs screamed and I think scared them both. The carer then sorted the alarm. To add insult to injury when Debbie asked for an omelette she said “I don’t do English food” (to be said in your best polish Accent). Since when is an omelette English. I canceled Abbey that night, in response to the problem they were abusive and threatening.

Don’t worry Clare Collins it gets better.

In the following week a friend of mine called and though I don’t believe in the occult she had been telling me I had to go see a “white witch” in Yorkshire that was “amazing” and will tell your future.

I did go to see her and without getting into too much detail she did tell me a great deal about my current situation without me having to saying a word. She also brought up the care and said I needed to recruit “Mrs Doubtfire” from the 90s movie. I knew what she meant and I had this in mind when I created the plan.

Plan ran like this

1, Cut off from stupid family

2, Place advert for carer

3, Get Job and return to work.

Step 1 easy and done, step 2 I placed an advert in Gumtree for an au pair style live in carer to look after Debbie. We had a lot of responses including a Turkish girl that was going to leave her 3 year old child to come to UK, Nigerian girl who turned up 2 hours late for the interview and didn’t seem to understand care. The second time we ran the advert we had an response from a woman in London who’s mother was in Romania and looking for work in the UK. She had been a carer in Italy but was available now. We had a Skype interview with Debbie and Me on one laptop, Lucia in Romania and her Daughter in London. The minute I saw Lucia I knew it was right, she looked like Mrs Doubtfire, and after talking I knew her heart was in the right place. She started with us in Feb 2014 and was the only reason I could return to work. She has been kind and helpful with Debbie’s care. We have had all sorts of issues getting Lucia in place but she had been the single best reason for putting my plan in place in the first place. Long live Lucia

About 2 months ago I started a new job this was part of my great plan. Interview and place a live in carer and return to work. We could keep the house and Debbie would be cared for.

Carer in place I started new job in IT project management. It was work from home and IT in major retail which used to be my specialist subject.

I started the new job about 2 months ago and day one Debbie’s mood changed severely to an ecstatic high.

Debbie has Bipolar as well as MS and the 2 effect each other a lot. When she’s on a high she’s going to be Prime Minister iand she will change the world. When she’s on a low she doesn’t want to leave the house. On lows she sits and watches paint dry. Lows are terrible for Debbie and she has talked of taking her own life during these periods. Highs are great for her but her behaviour is inappropriate. She puts herself at risk and this can be a worry if I have to leave her. This sounds terrible but lows are easier for me to deal with. She’s home safe and won’t leave or put herself in difficult situations.

So day one of new job Debbie is on a high, this is difficult because I can’t be there for her and she is running rings round the carer Lucia. Well wheeling round in her in her wheelchair. I speak to Debs a few times but it’s awkward when in an office talking to someone who is a little over the top. Conversations become a little one sided. It’s difficult in a new job normally but with this distraction it does pile on the stress, but we smile and push through anyway.

We managed a month with Debbie on a high and I hoped that things would calm down. Then one weekend Debbie fell off a cliff, all her symptoms suddenly got worse. That included swallowing which effects eating and drinking, then mobility and bladder problems. Debbie went into Trafford General for all these issues but mainly to have an NG (nasal gastric) tube fitted through her nose. Debbie had stopped drinking eating or taking meds so we needed a mechanism to do this. We had been told it needed to be a PEG feed fitted to Debs stomach but we weren’t going to get that in time so she needed an NG feed. An NG feed is passed up the nose and you have to swallow it again to get it past the throat. Debbie had this done but it only lasts for 6 weeks. Both myself and Lucia were trained in how to set up the feed system for Debbie and we seemed ready to go home.

My Daughter Lauren was getting married on the Friday so we pushed the medical staff for Debs to be released on the Friday morning. They would not have done this normally but then Debbie would have killed me if she didn’t make it. She left hospitial with the NG tube fitted. And we had a fantastic wedding.

The weekend following the wedding was a little more chaotic and with all the problems I had to call an ambulance on the Monday morning to take Debbie to Hospitial. I had to choose between the MRI or Wythenshaw. I choose the MRI I’m not sure I should have. My thinking was that we might get neurological specialist at the MRI, but no all the neurologists are at Salford and after 6 weeks Debbie with MS has still not seen a neurologist. I am dismayed.

I will post more details soon

When Debbie was first diagnosed with MS we had already had to deal with 8 years of miss diagnoses. The main thing her GP said was that Debbie had slipped disks. We pushed to get treatments but everything took so long 18 months her 12 months there. After 8 years of trying to get help a a woman who was giving Debbie massage for her slipped disk said to her ” You know what I’m doing is not helping, I’m not charging you today and you need to go back to your GP and insist on Neurological tests.” This woman knew then what she thought Debbie had. I wish she had told me as I would have sorted insurance better at that point.

Now I was busy with my job then and I paid some interest in a very male “let’s get this fixed” way but I didn’t pay much attention to that word “neurological” or what it meant.

Debbie went to see her GP who will remain nameless but she was the senior Doctor at a practice in Sale. She asked for Neurological tests and her GP dismissed her request saying I can’t see it being anything like that. Debbie insisted on the test in the face of opposition from her doctor which I think can be very hard. Someone who appears to be in a position of power telling you not to do something that you know nothing about.

Debbie went to Wythenshaw to have an MRI scan and to perform the EPT or checkerboard test http://www.m.webmd.com/multiple-sclerosis/evoked-potential-test-for-multiple-sclerosis

We waited for results but it didn’t seem like a big event. I had told friends that I thought they were going to show MRI scan of Debbies back and point out the cracks wear or damage in the bones and we could then try and get it fixed, everything seemed simple.

Feb 2008 we went to see “Dr Dick” (no not made up) for the results of the tests. I was heading to London that night on business so I had my bags and briefcase in the car and Debbie was going to drop me off at the station.

Dr Dick has a very mater of fact manor about him and he’s not the most emotional chap on the planet. We shook hands and sat down. He didn’t really explain what was going to happen and remember we thought slipped disks. He didn’t know that was all we thought. He started showing the images from the MRI scans and when we saw the ones from back I asked if he could see slipped disks. He looked at me a little odd and said “he would like to see where anyone got that from”
He then started showing scans higher up in Debbies brain and his narration changed. “This I’m not so happy about” he added “and this cloud here is not great” I was confused where is the slipped disk stuff? Why’s he talking about clouds? Debbie had already clicked, and she was not looking great. Dr Dick continued with “see another cloud” Debbie went to say something but pulled back. Dr Dick said “no go on Debbie what do you think it is? Debbie almost stuttered the letters “M, M, M S” Dr Dick said “yes Debbie that’s what I believe”. What he said was very matter of fact, almost cold, but I’m sure he wasn’t being cold.
The 10 seconds that followed this revelation was the longest and the shortest time ever, while we both took this in. Multiple Sclerosis what was that? Yuppies Disease? Then I remembered pictures of people in wheel chairs for charity campaigns. It started to click. I started to cry everything seemed to have just fell apart. That set Debbie off she was crying we were holding hands crying in from of the Doctor. He looked shocked, why are they crying didn’t they realise what this could be. I think he had done this so many times and I think others were prepared for the consequences of “neurological” tests. I was not.

I went home crying and started Googling MS, I called work crying to cancel my meetings, this was the start of my “battle” against MS.