Tag Archives: family

What makes us strong?

I was going to try and improve this, this morning, I don’t like how it reads but I’m not going to. Firstly because it was written when I didn’t feel great, by not changing it, you are seeing me on a bad day. Secondly, I feel worse this morning so I can’t!

Tonight, I’m tired and stiff and sore, I’ve had a sore throat and headache all afternoon and my brain is in a fog. I spent all afternoon lying on the sofa, fighting the urge to go to bed. I tried to read but can’t. I suspect this blog will be finished in the morning, I can already feel my fingers beginning to become painful and my headache worsening.

It is on days like today that it is so hard to remain positive and see happiness in what you’ve got. However, let me review the good things about my day:

1. My mother and father-in-law are looking after me (and my two cats) as my husband is going abroad on business tomorrow: I don’t have to look after myself alone.
2. My good friends Charlotte and Phil took me to the sea, bought me a cup of tea and let me spend time with their lovely son, George.
4. George asked to hold my hand while we walked back to the car.
3. My in-laws were out all day but my father-in-law left me a yummy stew for dinner.
4. My cats came and spent time with me throughout my day on the sofa.
5. My friend, Shelly, asked me if she could come and see me tomorrow despite it being a 90min drive and there was no guarantee I’d be able to see her for long.
6. My mother-in-law brought me tea in bed this morning and this evening.
7. My husband took my much under used but much loved Mx-5 for a drive so that the battery didn’t die.

That is just one day and not a particularly remarkable day. Perhaps some might think each of those little events mean little but put them altogether and they provide the strength you need to deal with the bad days.

I’ve been lucky, I’ve been surrounded by nothing but love and care since all of this began. My mum spent ten days with me the last time my husband went away, my dad researches treatments and regularly emails them to me, my cousins have sent me numerous caring messages, friends from all over the world have expressed their support and strangers I’ve never met have given me their time and energy (much limited) to share their M.E. experiences with me so I don’t feel alone.

A chronic illness doesn’t effect just one person, it effects all those around you. Each person has to do one thing or many things differently to cater for the needs of the chronically ill person.

For me, I don’t think I will ever know how my family / friends feel about my illness in reality, they are always supportive and always willing to help out. Yet it has disrupted their lives, there must be times when they get sick of it, when they would rather not finish cooking dinner for me because I got too tired or drive hours to collect me to bring me somewhere because I can no longer drive. This is a weight that they bear and it must be hard but their support helps to fill me with strength and helps me through the tough times.

For all chronically ill patients, I guess there is one primary carer. For me it is my husband. Over the last six and half years that we’ve been together, we’ve have gone through so much. I always thought we were strong, we must have been to get through them but now ill health has shown just how strong we are. His constant love and support (though I do have to remind him to vacuum!) enables me to do what I need to do to keep going, he enables me to remain positive. He makes me feel that no matter what happens to me, there will always be an ‘us’ fighting it together.

It is so easy to forget about the chronically ill – we are boring company at times, we can’t always guarantee we will follow through on our promises but remember you are part of their foundation of strength, you are essential to a chronically ill patient. Remember too though, we might be ill but we can, in our own way, be there for you too – we can be part of your foundation of strength.

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I have a cure…well maybe not…don’t do that it will make you worse!

Imagine that you are a loving, caring parent of a well-behaved, hard-working child. You are worried though because school seems to be a real struggle for them, especially where reading and writing are concerned. You notice that they tend to mix up letters when they are tired and struggle to follow lines in a text. How would you feel? Angry, frustrated, worried, alone?

You probably have a feeling that the problem might be dyslexia but you’re no expert so you can’t be sure. You do what any sensible parent would do and make an appointment to see their class teacher.

Imagine then that the teacher, worst case scenario, tells you there is nothing wrong with your child, it’s all in their mind! How would you feel? Angry, frustrated, worried, alone ? Would you think maybe it is all in your mind or maybe it is your child’s fault? Why not, somebody more expert than you has made that suggestion!

What about best case scenario they say that they think your child is dyslexic and that the child will just have to deal with it but don’t give you anything practical to do? How would you feel? Frustrated, alone, confused, worried, angry?

So what would any good parent do when they hear that their child has got dyslexia? They would google it! Now imagine on googling it you read a description of what dyslexia is and it perfectly matches your child. You then read up on how to ‘deal with it’ as the teacher suggested; every website has a different suggestion and often these suggestions are met with derision or anger on another website. You spend hours researching and ultimately end up with no clue as to what you should do although you are determined to do something! How do you feel? Scared, angry, frustrated, confused, alone?

So you return to the teacher and say I can’t do this alone, I respect you are more of an expert than me but I need someone with more expertise than you. They are lovely about it and say they will see if they can find someone. Two weeks later you follow it up and they say they have spoken to everyone in the school and nobody knows an expert. How do you feel? Scared, angry, frustrated, confused, alone?

So, imagine you return to lovely google, it takes seconds to find that there is a state specialist in the next county, although there is nobody in your county. You think, I’ll be efficient and give them a ring so I know they are the right people to pass on to the teacher. They say they are but as you are in a different county they don’t have to take you on. How would you feel? Angry, frustrated, worried, alone?

You get the teacher to make the referral anyhow and wait in trepidation to find out if you will get an appointment. In the meantime you meet lots of people whose children have dyslexia and read treatment surveys that show the official state recognised treatments are recognised to make the problem worse and are not recommended by the real experts. They are treatments based on an old understanding of the problem that has since been disproved!

You further learn that there are treatments that help far more people (though no guarantee of a cure) but they are not available from the state. So now you know your much fought for specialist appointment, when eventually it comes, may actually make your child worse! How would you feel? Angry, frustrated, worried, alone?

You quickly realise the only way to help them is to try as many different treatments as possible, some costing a few pounds some thousands but none of them covered by the state. You are very aware though that these may help your child but reading treatment surveys, you are also aware that they could make them worse. How would you feel? Angry, frustrated, worried, alone?

If parents of dyslexic children were really treated this way, do you think it would be accepted? Do you think it would be fair? Do you think you could cope?

Replace the word teacher with GP and dyslexia for M.E. and that is the reality for all sufferers. Some of us, like myself, are lucky to have supportive GPs (even if they don’t know a lot) but far too many patients are accused of being depressed or anxious and that it is all in their mind. It is not unknown for people to be forcibly sent to psychiatric hospitals or children to be removed from their families because the symptoms are seen as a cry for help from an abused child, there are bed-bound patients who haven’t left the house in 5 years who haven’t seen a GP or a consultant in this time because they can’t leave their house and doctors won’t visit them.

How would you feel if that was you, your partner or your child? Angry, frustrated, worried, alone?

So what is needed? More invested in research both of the cause and a cure. An investment of £1 per patient per year in the UK is not enough to help 250,000 people whose lives are permanently on hold. People who could be income generators for this country, people who could add to the intellectual wealth of this country are being prevented from doing so because M.E. is not only a misunderstood disease but one that is unattractive for investment and for researchers.

I cannot solve this alone, my family cannot solve this for me – for the moment however I have no choice but to try.

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Oh I think I have it too! Heee, heee!

Opps this is a long one 🙂

Twice in the last month good friends when I told them I had M.E. had never heard of it. Fair enough English isn’t their first language. When I then said sometimes it’s known as Chronic Fatigue Syndrome* thinking they may have heard of that, they responded with, “Oh I think I have it too! Hee, heee!”

The other day my curmudgeonly neighbour said to me, “I hear you’ve been ill.” “Yes, I have M.E.” “Have you had a few weeks off work then?” “No, I’ve been off for four months!” “It’s not that you can’t be bothered going back to work then, hee, heee!”

When I first went off work after two weeks I tried to return, just doing two hours a day. I had heard that some people had been bad mouthing me, saying that, “we’re all tired, she should just go to bed earlier!” One lady completely blanked me, I purposefully said hi and she walked on by me. She was disgusted with me for being so lazy! Yes, those that know me – lazy! I only used to work 11 hours a day having cut it down from 12+ as I didn’t want to burn out!

The first three people were just examples of ignorance. How many people you know could tell you what M.E. is? My two friends are fabulous and would be horrified if they knew that their comment made me feel quite raw. The last example is also ignorance compounded with plain rudeness!

Ignorance about M.E. is to be expected. It is the hidden disease that rarely shows it’s face. If you’re meeting somebody with M.E. outside of their home, you’re meeting them on a good day and you possibly wouldn’t even notice that something was up. On a bad day, I can only drag myself to the sofa, on a really bad day, I can’t drag myself out of bed!

I’m lucky that I only experience mild to moderate symptoms – I’m very aware that there are people who suffer significantly more than I do. There is a scale for assessing the severity of your M.E., I think I’m roughly 38% as active as I used to be pre-M.E. and this is a huge positive – I could be 37% worse!

So how does M.E. affect me: fatigue, headaches, muscle pain, joint pain, appalling sleep, pins and needles, frequent urination, stiff and painful joints in my hands, pain in eyes and blurred vision, sensitivity to noise, back ache, neck ache and random others that come and go for no apparent reason. I don’t get all of them all of the time and they are not always debilitating, sometimes it is just a dull pain in the background.

By far the most debilitating aspect is the fatigue – this is definitely moderate to severe always. Do you recall a night out that probably started at lunch time the day before – you drank, you walked miles to different pubs, you danced all night? Do you remember waking up the next morning, feeling so tired you couldn’t get out of bed? You doze all morning and yet you wake up feeling no better? Well that’s me or M.E. I’m not that bad all the time but it does always feel like that languid hangover dullness and exhaustion to one extent or another.

There is a fundraising campaign at the moment for an organisation called Invest in M.E. There is a group selling t-shirts that show an empty petrol gauge and the slogan ‘running on empty’.** It feels like I’m never able to get that gauge above empty yet I still need energy for my pure existence.

If I don’t pace myself and plan out all my activities for the day the consequence of that gauge running completely on empty is really frightening especially if I’m not at home.

Last weekend we went to Cardiff just for the Saturday night. I hadn’t really left the confines of Stratford since early January and was desperate to see a different world. We thought we were being careful. We broke the trip half-way to get breakfast so I didn’t stiffen up too much; I rested when we got there; we went out for a coffee and a little walk around (20 min walk with coffee and various other stops); I then rested for two hours before we went out for food at 4 p.m. We ate dinner and then decided to go to the cinema. This was going to be the longest I had without being able to rest for months – 4 hours out of hotel.

About an hour into the film I began to feel the usual signs that I’d done too much – a fog descends and pain levels increase. I was a fool and stayed, it was the first time we had been out like this for months, it felt like a date and I didn’t want it to stop. By the end of the film I was in a state of near collapse.

Under normal circumstances the hotel was no more than a 2-3 minute walk from the cinema – it took us at least ten minutes. I needed to stop every couple of steps to get my breathe back and rest. My entire body was in agonising pain and I was fighting not to burst into floods of tears. Chris effectively had to hold me up. We always joke at this point that others must think I’m absolutely drunk out of my head and at only 8.15 as well!

We eventually returned to the hotel and I went to bed, aware that my poor pacing would now lead to a four day recovery pattern – these days it’s always the same. Day One – collapse and get to bed; day two – in bed all day (though this time we had to drive home too – fun!); day three – out of bed but not able to do much but sit on sofa and make basic lunch; day four – able to leave the house and walk to town (0.3 miles) have coffee then struggle home and then on sofa for rest of day. By the next day I’m back to normal whatever that actually is!

This is probably quite shocking for people who know me or people who know nothing about M.E. but remember I’m one of the lucky ones. I get to leave the house at least 4 days out of 7, I’m not bed bound, I don’t need crutches or a wheelchair, I can wash myself and dress myself, I can feed myself.

I wrote this not to get attention or have people feel sympathy for me, far from it. I simply want people to know the reality of M.E. I want to unearth this hidden disease, I want to reduce ignorance about it so that at least you the reader never make a throw away comment to a sufferer that hurts them through ignorance.

* yes! I know that some people say it’s different but the Canadian Consensus Criteria doesn’t.
** to buy a t-shirt go to http://www.mamachill.moonfruit.com