This is why I do what I do for charity

http://www.youtube.com/watch?v=1etPXvHnhGU&feature=channel_page

No one understands the full implications of this illness until it hits them not only physical, mentally but financially as well.

This is why I campaign so hard to help others who are worse off than me and who really need the help.

I don't do it for reward I do this because it keeps me going.

The last couple of weeks have been hard for me not being able to go out and do any charity work has hit me hard but watching videos back of what I have achieved and am achieving is helping.

There is still much more I can do and I will do to help others.

I am not going to let my physical or mental state let me give up. I am determined to get through the fight for bureaucracy that chronically sick patients fight daily.

I want a life without having to fill in long horrendous complicated forms and that once someone gets a diagnosis they should automatically be given the benefits they require. Not have to have an examination with a 32 page report which is incorrect posted out to them after a certain period of time being on a certain benefit.

I am so excited

Dear All

(I hope you are all sitting down to read this otherwise you will fall over)

After the week I have had with its ups and downs visits in and out of hospital, Shropdoc you name it and needles which I hate with a vengence I am slowly starting to feel much better.

Well I opened up my emails today and I am still pinching myself. Why? I hear you ask.

To cut a long story short Ronan Keating has got a member of his staff to email me and offer two complimentary tickets to his live tour in June this year.

My initial reaction was to telephone MacMillan and offer them to them (who immediately refused and told me to make use of them myself). I have never been to a live concert ever in my life let alone a huge famous band like this one.

Steve is over the moon and was amazed when I tried to offer the tickets to MacMillan. I suppose I am just scared of big crowds and hence had a fear of going and thought the charity might like them to raise some money. Typical of me says Steve.

Oh well just got to wait and see now whether the dates we want are avaiable and have confirmation as I know from my legal work nothing is certain until its in your hands.

So am waiting to hear back now.

Best wishes to everyone

Fee

Inspired

Thanks to Saturday's visit to Attingham Park my husband and I have now become members of the National Trust.

I am looking forward to venturing there again in the very near future and taking my time so that I can ensure I enjoy every thing at a steady pace.

It just goes to show what a day out can do not only to make me feel inspired but it also helps the National Trust as well.

Thanks again

Best wishes

Fee

Mother's Day :-(

I hope all you wonderful mums have a wonderful day and really enjoy it.

I tried telephoning my mother having sent a card and as usual got no answer. I am hurting each time this happens as I feel it is rejection or perhaps I am overreacting.

I last saw my parents in March 2005 but I do speak on the telephone as and when I can. I always send the relevant cards and try and make contact as much as possible. I invited them to my wedding but they unfortunately had other plans.

In some ways I wish I was a mum myself but I know this will never happen as I made a very hard decision when I was 32 and just been diagnosed. I had no idea I was pregnant at the time of the operation and the nurses did not do pregnancy tests back then. So I had the operation and went home the say day. A couple of months later early January I felt extremely unwell and collapsed I was taken to hospital and then referred to a larger one. Here I discovered I was pregnant. I saw the gynaecologist the following week who said with my illness we would have to be extremely careful if the pregnancy was to continue and I had a while to decide what I wanted to do. The decision was made for me as a couple of days later I miscarried this meant a removal of products had to be carried out (yet another operation). The lovely gynaecologist told me I could also be sterilised at the same time to prevent the risk of yet another miscarriage and also the risk of passing the illness on to my offspring. I had a couple of days in which to decide.

In some ways I feel I took the coward's way out. I had the operation and sterilisation so will never know what it is going to be like to be a natural mother. I did have step children in my first marriage and loved them as if they were my own. Making things for them and loving them as best I could but I always knew and often they reminded me "You are not my real mum".

So I know life is tough and hard decisions have to be made. I made the decisions with the advice from the professionals but sometimes I yearn for what I have not got other days when I hear a baby screaming in a shop and it just won't stop I feel I am glad it is not happening to me.

So for all you mothers who have children, babies, teenagers or grown up remember you are the lucky ones you have faced your challenges and will have more to come because even when children are adults they always want their mum.

Best wishes

Fee

Thank You Wrekin Writers

Dear Simon and others

It was a lovely meeting today in totally different surroundings and what a large group we now have.

I was so glad I struggled to make the day out and am truly glad I did. Everyone as normal was friendly and each time I seem to sit by someone different so that helps the socialising side much better.

I am hopeless with names and remembering things at present due to medication but I think I was sitting next to Dorothy (if wrong name I sincerely apologise) she looked after me so well and made sure my needs were met as much as possible. The Natural Trust certainly did us proud providing the room. The catering was much better than our "normal" meetings and it was lovely to see the sunshine.

When I got home I was so exhausted I fell asleep on the sofa due to the exhilaration and hilarity of the morning.

I will certainly be returning to Attingham not only with Wrekin Writers but will drag my poor suffering husband out of these four walls to enjoy life too.

I am certainly inspired to do more research and continue to write who knows where this will lead.

I am now more determined than ever to obtain a treasured and prized Moleskin which Simon so lovingly unwrapped before our very eyes at last month's Wrekin Writers meeting.

I am going to recharge my batteries for a while thanks to the medication at least one good thing I have now finished my antibiotics HOORAY. So a few less tablets a day to take.

The waiting game is what I am in for now. Waiting to hear from publisher and waiting for hospital appointments.

I hope to make next month's meeting but if I can't I will certainly let you know.

I am getting so popular I have already had three appointments all on the same date in April and have cancelled one already the others are going to either fit inside each other and I will end up being a whirlwind at each event or I am just going to have pace myself and for once be choosy.

Not an easy task when Wrekin Writers means so much to mean.

Thank you again Simon, Sue and all the others who I have not mentioned it means so much to be part of this "mad" group but I am so very glad I found you all.

Best wishes

Fee

This is what changed my life in so many ways

Half and half

Yesterday was a traumatic day to say the least. I had been trying to find out when one of my hospital appointments was for the last three weeks. Steve chased yesterday morning at 9.05 am and was told it was at 10.45 that day. Needless to say it was a rush to get me ready to go. We got there to discover the Professor was running over 2 hours late and had not even arrived yet!!!

So we were advised to go and get a cuppa. Just trying to work out where to go as there is very little wheelchair accommodation in the tea area when I was asked to go for an x-ray. This I duly did and then was advised again to go and get a drink and something to eat. By the time we had had something to eat and drink it was gone 1pm. So we returned the clinic area. Eventually we were called in and the registrar saw me and said he was going to get the Professor to review me. After waiting over 45 minutes the registrar returned without the professor and said "your condition has not changed therefore we will see you again in twelve months".

The last time they saw me I was walking the corridor with sticks this time I was in a wheelchair so hence my condition had changed.

I asked about the other symptoms I was having in the hope that I was going to get referred to someone. I just got told it was not his department and that I was to go home and if the symptoms reoccurred I was to call for an ambulance by 999.

I therefore telephoned my GP today and told him the outcome of the appointment of yesterday and he said "I am not sure who to refer you to but leave it with me I will do some research and you will be referred to the correct specialist".

As my husband is now my full time carer and had applied for Carers Allowance last week he received a letter by post this morning saying his Job Seekers Money would be going into a bank account which is now closed so he telephoned them to let them know this. The DWP then asked him why he had not been to sign on at 10.30 am. He explained he is now applying for Carers Allowance and they told him to get to the job centre in Madley for 11.30 am. We arrived there and after waiting a while we were eventually called. The gentleman behind the desk enquired why he had not filled in his diary of looking for work when I explained he was applying for carers allowance and the reasons why this had not happened before last week due to the fact that the letter had arrived a week ago Saturday explaining my care level had gone from low to middle rate from the DLA and that he was only entitled to apply for Carers Allowance as of last Monday and the form arrived last Tuesday that was why he had not filled in his "diary".

When I explained that the letter stated that my care level had gone up as of the 9th January but we had applied on the 6th January and that it had taken over 3 months to be informed that the care level had gone up the staff looked stunned but agreed the system was not brilliant for the genuine claimants.

Now my husband is applying for Carers Allowance he cannot claim JobSeeekers on top we understood this and hence that was the reason we thought he did not have to go and sign on today.

Once Carers Allowance is agreed and we are notified by letter than we can claim Income Support. I enquired how long this would take to happen response 3 -4 weeks. I said "you know that someone is entitled to a certain benefit and yet they can't apply for it until another comes into force by letter, what are they meant to do in the meantime?"

Well depending on the circumstances we can back date certain things. I then said they could not back the Carers Allowance as my husband had earned in excess of an average of £95 per week and hence the claim had had to commence from that date. The gentleman dealing with us looked stunned.

I then asked if we could claim Income Support as of now and was informed "NO".

This is why people like us just want to give up on life.

I throw myself into helping others and doing various things to keep busy otherwise I would go around the twist. My medication is not helping me with thinking and writing and I am finding everything a struggle.

When you meet me on Saturday if I have a lapse of concentration it is not that I am not paying attention or not listening to anyone it is the medication making me like this. I then get frustrated and frequently have to ask what was I talking about.

Bless my husband he is so caring and wonderful about it all. Today I have had to borrow his hanky three times so far to wipe my tears of anxiety away.

On the good side though so far I have gained four raffle prizes for Cancer Research Relay for Life event in September and have several addresses to write to so that we can gain some more donations.

So I am feeling a lot more positive about things now.

The sun is shining and I am going to venture out again this afternoon.

Best wishes

Fee