New Research from Dundee Hospital

New research has been done by Dundee Hospital finding further evidence that M.E. is linked to a virus.  It is great news that research is being done on this scale and to help Children who have it.  It must be very hard for them to deal with.  As an adult I have had to deal with prejudice, disgust and no one believing me.

I have copies of all my blood tests from my doctors, as I paid privately to see a neurologist, needing them to show him.  This also showed some abnormalities in my blood.  I am going to contact Professor Jill Belch to see if these will help in her research. Here's hoping they can and I still strive every day to educate people on this horrible disease which is not all in your mind.  I am counting down the days to the conference in London that Action for ME has organised regarding benefits and M.E.  I am going to hopefully be educated about the ESA system and to tell them what it is like to have the illness and be constantly preyed on.

http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884

E.S.A. Medical

I was summoned by Atos Healthcare, to attend a medical last month. This is because I receive Employment and Support Allowance, formally Incapacity Benefit. This was my second medical, the first one was done in May 2008 at home. I had struggled to get a home medical, as they wanted me to attend one in Bournemouth, a week after having my spinal surgery. I was very upset by this, as I should have been recovering from my operation, after 8 phone calls, many in tears. I eventually convinced them that I could not walk or sit for long, they expected me to sit in a car for an hour and then have a medical and return home, truthfully there was NO way I could manage that.

So as you can gather I was not looking forward to another one, it drags up many emotional feelings and issues from just trying to get my illness diagnosed. I was very lucky though, as I had the Benefits Advisor from the Dorset M.E. Support Group to accompany me.

It was held in offices above the Weymouth Job Centre. I was shown into the room by the doctor and told to sit down. Immediately I realised that this room was on a main road and under the room was a bus stop. I asked the doctor if we could shut the window as it was so noisy. He asked me many questions about my illness and wanted to know dates and details which were extremely hard to remember. I got upset at having to go through it all again and cried, I just could not stop the emotions from flowing. He took my blood pressure and pulse and told me to stand and do some movements with my arms. Then I had to try and bend, which I can't . I was continued to be fired questions at and the doctor tapped in my answers into a extremely noisy keyboard. I had to stop and stand as my back was hurting, then the vibrations from the bus at the bus stop, halting my thinking.

So by now I was hot and flustered, in pain, confused, agitated by the noise and emotionally drained.

I asked the doctor why I had to keep going backwards over the past. I wanted to move forward and these medicals were not helping me. I was not making up my illness and had medical proof for this. It was like trying to convince people that I was ill all over again.

Well this way my experience and I am sharing it with others. I only wish some of the politicians could be in my shoes and see what its really like.

Refresh and Move forward Session at Dorchester

I attended a session last month at Dorchester held by the Dorset M.E. Support Group. There were two occupational therapists there from the M.E. Clinic in Wareham. There were about 8 of us there all at different stages in our illness. I wanted to share some of the points made for anyone who could not attend or has an interest.

We talked mainly about how to move forward in recovery from M.E. and the chart below shows how this could work.

CFS Symptoms

Acceptance and Choice

Stabilisation

Controlled Activity Increases

This is the way to move forward but what often happens is that when activity is increased you go back to the start and your symptoms get worse, therefore having to start the process again.

The Stabilisation area is a consolidation whilst gaining confidence area.

This way forward was created by Diane Cox an Occupational Therapist at The Romford Hospital specialising in M.E.

It was also explained what happens to you when you have M.E. Your HPA Axis has gone wrong. Its your Hypothalamus, Pituitary and Adrenal System that controls a lot of different things in your body. I have tried to explain this to people, that ask and those who do not understand the condition look at me very cynically. I know something went wrong when I got shingles and I have not returned to my previous healthy self, so my fight for understanding still seems to go on.

What helps

Acceptance

Knowledge

Peer Support

Prioritising Time and Activities

Prayer and Belief

Understanding from others

Saying No

Support from significant others

Reminders

Preparing and Planning

Relaxing

Low energy hobbie

Routines

Diet

Avoiding Stressful situations

Ending on this note I had to have another medical for my ESA benefit and I will post a separate blog on that issue another time.

Please contact me if you wish to discuss this further: fifimurphy@hotmail.co.uk

Britain waking up to M.E. on GMTV today

Today on GMTV Lorraine Kelly interviewed Kay Gilderdale who was tried for the attempted murder of her daughter Lynn. It was a moving interview handled very well by Lorraine. It brought me to tears. My fight myself to recover from M.E. goes on I had a very busy weekend and it all caught up with me on Monday when I could not cope with family life and had to go to bed. The severe fatigue causes me to not be able to speak or function normally, its horrible. I hope there is some hope from Kays appearance in the media that some funding will go into research for this disease.





I have fortunately been given a reprieve from the Job Centre as on my last visit on Friday 21st May was told that funding for courses was not available anymore. I said this was not fair and a case for me went up to the higher dept of the department for works and pensions for them to decide. They phoned me and said they would uphold the £150 pounds offered to me previously and I should try elsewhere for the balance as the course is £240. The Writers Bureau Ltd have been kind and said I can pay in installments so I will carry on my fight for help. Another form arrived today of numerous pages long, a survey for My ESA benefit, I think I will ask the benefits advisor to help as it is so complicated and does not do me any good if I get it wrong.





I hosted along with a fellow member the writing class recently. The form poems i suggested seemed to go down the best and here was one of mine.

Sun

Sand

Relax me

Unwind and Loosen

Sea Air Breathe Deep

Refresh and Invigorate

See the sights and Amaze me

Wish these seven days were eternity

The Road to Writing Sucess!

On Thursday 22 April, I attended a back to work talk organised by the Dorset ME support Group. There were four main speakers. Nick Crabb, pathways to work advisor from Jobcentre Plus, Neil Pack, Access to work adviser, jobcentre plus, Jill Fullbrook, Placement Officer Dorset Community employment Services and Marie Waterman, Volunteer coordinator, The Volunteer Centre Dorset. The objective was to help people overcome their fears and anxieties relating to the Employment Support Allowance process. To inspire people to think about some form of employment now or in the future. It was very informative and felt there was some hope out there generally from Neil Pack who helps disabled people stay in employment. My problems is who would give me a job, Nick Crabb agreed with M.E. and spinal stenosis I had limited options. Bu my fight continues to get the funding for my writing course. I contacted Jim Knight and the very nice Hazel phoned me and agreed that this was the right way to go and was going to contact the work and pensions office to put forward my dilemma. Diet still going good although my chocolate addiction does not help, I have found another good recipe that I have adapted and my husband says they are very yummy so will post on the recipe for anyone who wants it.

Fifi's Yummy Drop Scones

225 g Dove Farms Self Raising Flour Wheat and Gluten Free
1/2 tsp salt
2 Tbsp Fruit Sugar
1/2 pint of Rice milk
1 egg

Sieve the flour and salt together into a bowl, then add the sugar, break in the egg and using a whisk and half of the milk whisk together, then add the rest of the milk and whisk further into a smooth batter. Heat some oil in a large frying pan or griddle and drop about one dessert spoon full of batter until bubbles form on the top and flip over. They are done when golden brown. Serve with blueberies and soya yogurt whilst still warm, or eat cold with dary free spread on.

Job Center Dilema !

Tommorow I am off to the Job Center for one of my numerous visits. I have to go every three months for a chat. I am armed with details of a creative writing course that I found in Prima magazine. I have lots to tell my new adviser and I am being accompainied by the Dorset Me Support Co-ordinator for moral support and help. Let's hope it will be good news and I can move forward in a new direction with my life.

The diet is still going well but I have not managed to give up chocolate. All girls and maybe guys can understand this as it is so addictive. Creme eggs are not round for long so I feel I must eat them as I will not be able to get another one for a while. I have perfected my Rice Milk Porridge with bluberiies with is just so yummy so I will put the details on of how I make it. Take care all xxx

Rice Milk Porridge
30g of Porridge Oats
Rice Milk
Fruit Sugar
Blueberries

Measure out your oats and put into a bowl, cover completely with Rice Milk. Put inot the Microwave mine is 600W for 2 minutes and 30 seconds. This should give you perfect porridge. I put on more milk sprinkle a bit of fruit sugar and add a handful of blueberries. Yum xx

New Diet

I have been to see a local lady for Vegan Allergy testing. It was recommended to me by a fellow creative writer at my class in Weymouth Library. I had heard about her before and had a very close friend do a similar test with someone else and it helped her Asthma tremendously. So off I went. I was there for over an hour and I think we were both gobsmacked at all the foods I had shown up as intolerant to. Some I kind of expected as had struggled over the years with IBS and many people with M.E. also do. But some were unexpected.

So now I try my best to have a different kind of diet that excludes: Wheat, Gluten, Yeast, Sugar, Dairy, Tomatoes, Apples, Oranges, Lemons, Potatoes, unusually Vodka !, White Wine, Pork,Mushrooms, MSG and CHOCOLATE !, that's the hard one, plus tea and coffee. Most people say to me what do you eat, but I do not starve myself, I assure you. I had to get my head round it a bit. So I sat and wrote a list of all things that I can eat and felt a lot better. I was also advised to take a daily supplement and I was low on Vitamins and Minerals.

Nearly a month on and I feel so much better, my digestion has improved tremendously, no more constipation. Now I have a flatter stomach, and more energy. I do have to eat little an often as now I am not getting my energy from caffeine or sugar. For the first few days I did have a headache, this is nothing unusual for people with M.E. but was reassured by my Allergist that this was Caffeine withdrawal.

I now have cornflakes with fruit and soya milk for breakfast, usually a pear for snack. Oatcakes and Houmous or Ricecakes and mashed banana for lunch and Meat or fish and veg for tea, sweet potato replaced for the jacket or chips. I drink fruit herbal tea and blackcurrant no added sugar squash or cranberry juice, low sugar. I snack on Nuts or Dried fruit and have found in Tesco, pure fruit sugar fructose which I have on my porridge. I am experimenting with recipes and I am posting one that both myself and my daughter made, it was yummy. I will post more another time.

Lamb meatballs with Veg Sauce and Rice

1 Onion
1 Pack of Lamb Mince
1 Piece of Gluten Free Bread
1 Egg
2 Sml Sweet Potatoes
500ml Veg Stock yeast free
1 Red Pepper
Rice
2 tablespoons of Veg Oil.

Chop the onion and add to the mince in a bowl, crack in the egg, whizz up the bread until breadcrumbs and add to meat mixture. Stir all together until combined, adding herbs if required for flavour. Break up meat mixture into eight balls rolling in hands and set aside. In a frying pan heat the oil until quite hot and add the meatballs, turning, until all sides are brown, this is a bit tricky, I did it with two spatulas. Make sure they are cooked through before serving. Whilst they are cooking peel the sweet potatoes and chop the red pepper and then put into a pan with the veg stock and bring to the boil until soft. Using a stick blender, blend until smooth adding small amounts of water until the right consistency is achieved for a sauce. Cook your rice according to label or packet. Serve your meatballs on a bed of rice, pouring your sauce over the top. Yum !!!