Why M.E. (Myeligic Encephlophapy)?

2010-07-24T05:18:00.000-07:00

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

2010-05-26T06:27:00.000-07:00

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!

2010-04-23T12:21:00.000-07:00

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 !

2010-03-30T07:47:00.000-07:00

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

2010-02-21T03:41:00.000-08:00

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 !!!

2010-02-01T07:22:00.000-08:00

My Writing

I have joined a creative writing class at Weymouth Library and am extremely enjoying it. The sitting and concentration is particularly hard for me as my back kills last week had to take a Co-codamol for the pain, which is never good as it gives me a fuzzy head. Even worse than ME Brain Fog. But I am perservering as I am meeting new people that also enjoy writing and I am learning lots of different ways of expressing myself with words. I have been writing my story and what happened to me, my journey through diagnosis and onwards its title is the same as this Blog as I still feel like screaming sometimes WHY M.E. I have also published one of my poems writen for someone I met at my support group. She told me how one day she had ventured out and was waiting for a bus to return Home. An old lady asked her where her Bus Stop was and she told her. The Lady was horrified and said to her 'A young girl like you should be walking'. This prompted her to burst into tears so here is the reply to her.

But you Look Alright

When you Look at me what do you see?

Is it a person with M.E.

But you look alright they say all the time,

Is brushing your hair such a crime.

Shall I not not bother with Blusher or Lipstick,

Do you want me just to LOOK SICK?

You cannot see on the outside,

The illness inside I try to hide.

Not all disabilities are visible to the eye,

Can you be understanding, why not TRY!

forgotten blog

2010-01-31T05:10:00.000-08:00

We her we are now in Jan 2010. A lot has happened to me in this time. I had Spinal Decompression surgery in Jan 2009 and had to recover from that operation. All I can say is that at least the doctors are listening to me now and I had the extra bag of fluids I needed not to get the dreaded ME headache.

At slight problem to my recovery, fell backwards on to my back and hit my head (don,t know how) fracturing my sacrum. This hurt like hell and could not sit or lie on my back for 6 weeks and went back to using crutches. I have had a few other slip ups but laugh at myself and my crap leg/balance !

Moving onwards and at present I had been to Wareham Hospital for Lifestyle Management and now understand more about my illness. Acceptance is still a problem as I dont want to accept that I will have this Illness forever. I have been writing which is therapy to me, but sometimes its not as good as others. I have met many new fantastic people in the Dorset ME Support Group and my creative writing group at Weymouth Library.

I am at present embarking on a new diet after going to see an Allergist in Weymouth. There is a lot of stuff writen about Candida and Gluten and How it effects people with ME, so giving it a go.
It is Gluten, Yeast, Dairy and Sugar free, no tomatoes, pototoes, tea, coffee, mushrooms, apples, oranges, lemons or mandarins. It also showed up I had a deficency in Minerals Vit c and Vit B6 and Iron so am now taking a supplement. I am have nearly completed a week and will publish some recipes at a later date. I can now see my tongue is pink not white.

I also have been doing a shoe auction for the Dorset Support Group and got to meet Jim Knight MP who donated a pair to me. So things have changed and I enjoy different things now

2008-09-12T07:22:00.000-07:00

Well have been visited by my bosses to day. Only cried twice what a baby, but perhaps they would like to have to walk with a walking stick. Why does everyone look at you as you have two heads when you are young, well sort off i am only 40 and walk like a wonky donkey ha ha!. My mum is brilliant she should be only the stage permanently, she was telling them all about her current play she will be directing. She always reminds me of Julie Walters. But i love her too bits. I think my kids have got used to me being at home, they just want me to phone people and tell them I get disability allowance so can they get more money. I suppose they deserve it. The funny thing is since my daughter has been 18 and going out on the town. I have been too ill too. I was not looking forward to seeing he rbeing oggled at by men I would probably punch them. As when I get drunk I become suddenly invincible. I should fight all my battles drunk!!!!!!!!!

Why did i get M.E.

2008-09-10T13:05:00.000-07:00

We women cannot have it all. Wife, mum, friend and hold down a full time job. Fiona Philips from GMTV would probably agree. I ws trying to hard to keeping everyone happy and my health was the one that suffered. it should be a warning. Plus I had crap doctors. They made me worse not better. Now after two years of battling to get help and talking about M.E. enough people are finally waking up to the fact that I have it. There has been may tears and much pain and too many visits to doctors and specialists which has taken money and time wasted in my life. If there is any one out there that knows anyone that has M.E. i urge them to contact me as I am going to try and help as many people as I can not to go through what I have.

Got shingles April 2006
Back to the doctors many times developed right side weakness.
Had MRI scan July 2006 on my brain and neck
Had Evoked Potentials (Electrodes on my brain)
Blood tests
Got diagnosed with Chronic Fatigue Syndrome in September 2006
Got told to go back to work and just get on with it Oct 2006
Decided not to return to my stressful full time job so quit
Got a new tempoary job. Lost my job in Jan 2007 diagnosed with Anaemia after more blood tests.
Got a new job April 2007. Starting having more problems.
After getting a book from the library asked my doctor if I had M.E. she said yes and told to live with it.
Had relapse Jan 2008 struggled to keep going.
Further tests neurological tests, another MRI suggested.
Another relapse May 2008 very close to nervous breakdown, not coping well.
June 2008, revelation changed doctors. New MRI scan on back done.
Found Spinal problem told should have epidural and then FINALLY referred to M.E. Clinic
August 2008 Epidural not good headaches and felt like my spine on fire.

Well I am now disabled have to sell all my high heels and wold love to be able to dance with my friends once more. I miss having a social life a lot. So I shall just have to learn to do something else!