Friday, 19 January 2018

So your child has ME/CFS

You may feel that a diagnosis should be the start of the story with the doctor, but sometimes, when it's a chronic illness, they believe it's the end. This can leave you feeling abandoned and that your child has been failed by "the system" and you'd be right.
Myalgic Encephalitis has been called many things over time. ME, CFS, hysteria, laziness, multiple psychological disorders, yuppie flu. As society we don't recognise those who suffer for years, we see those who have big operations as brave, who fight cancer as warriors, but to endure 24/7 suffering with no hope is sight is seen as an annoyance and one to be dismissed as fictional. No one wants to believe that something that you can't see, cant measure, won't show up on an x-ray or blood test, can rob your child of years if their life and have no real treatment or cure.
I'm sorry if that sounds bleak, but you may be hear for answers and I want to give them to you. ME is bleak, because society and the medical community at large will not help. There is a massive lack of investment in research into the causes and mechanisms of ME. That isn't accidental, it's part if a wider dismissal of the disease by scientific communities.
The World Health Organisation (WHO), National Institute for Clinical Excellence (NICE), Department of Health and NHS all recognise ME as a physical illness. In reality, it is seen by many practising physicians as a psychiatric condition, a common theme you will find is that people believe you can simply "pull yourself together" and be well.

The one main symptom of ME that is recognised by most is Post Exertional Malaise (PEM). That means that when you exert yourself in any way (getting out of bed, brushing your teeth, walking) the malaise or fatigue felt afterwards is several times that of someone who doesn't have ME. This is best explained by the spoon theory. Spoon theory claims that most people have a supply of spoons to get through the day. A well person's supply is not infinite, but is very high and rarely runs out unless they undertake boot camp or a marathon or other extreme task. Someone with ME may only have a few spoons between 3 and 10. Getting out of bed takes a spoon, getting a shower would take 3 spoons, making a meal is takes a spoon, getting dressed takes a spoon. That's why you won't often meet alot of people with ME. You can easily see how having so few spoons ND needing so many to just simply get ready and fed, getting out of the house becomes impossible. Some people with ME may have 20 spoons. They may have a part time job or go to school. Compared to a healthy person who may have 200 spoons, they are severly limited in attempting a "normal life". What happens when you run out of spoons? You may ask. Nothing. Nothing can happen if you run out if spoons. Where ever you are you will be unable to sit upright, totally unable to walk, many are unable to talk. This is called a crash and many people with ME are familiar with this.
This is where pacing comes into things, because you need to open your eyes and be able to assess how many spoons you have today. A key point of ME is that your spoon supply will vary day to day. So you need to draw on your personal experience of ME and think, "How many spoons do I have?" Then plan the day around that spoon supply. Ensuring you have enough spoons to get back to bed before you run out, or else you will require literally carrying back to your bed. That suddenly doesn't sound so easy when you only get 10 spoons, it's impossible if you wake up with 2 or 3.

25% if people with ME wake up every morning with such a vastly reduced number if spoons, they are severely ill, sometimes paralysed in the legs, sometimes paralysed in the digestive system requiring tube feeding. They are completely bed bound and extremely sensitive to light and sound.

You may see this to a lesser extent in a person who is in a crash. If you constantly run your spoons down and try to use spoons you don't have, you will crash. This leads to worsening symptoms if ME such as nausea, vomiting, muscle pain, headaches, sensitivity to light and sound, uncontrollable tremors, difficulty controlling body temperature to either extreme, general flu like symptoms. This miserable management if ME will drive you into more and more severe ME until you could end up as one of the 25%.

Unfortunately for many children with ME, the above mismanagement and misunderstanding of "spoon theory" is exactly what they are prescribed to "cure" ME.

Graded Exercise THERAPY (GET) is the official terminology and it involved increasing exertion by 10% every week. Every single week, ignoring how many "spoons" you have, how bad the Post Exertional Malaise is, even if you crash completely. There is no mercy for increasing symptoms and the steady decline into severe ME. Failure to get well from GET is considered to be due to failure in the patients part, refusal to comply or labelled as ODD or other psychiatric illness.

GET comes from a trial which reported to show improvement in patients with ME. These results have been shown to be fraudulent. Faked to gain notoriety and financial gain. This has not stopped them being rolled out across the NHS as a supposed treatment for ME. The ME Association did its own study into GET and found that for many it does not help and for the majority it causes a worsening of overall symptoms. GET is not accepted by the vast majority of ME charities and advocates as anything but damaging to children with ME. 

In America they have removed endorsement if GET from official documentation and there is currently a review of the British NICE guidelines that recommend GET as a possible treatment option for mild to moderate ME. The tide is slowly turning on GET, but that doesn't mean you wont be offered it as a treatment plan for your child with ME.

Saturday, 16 September 2017

CBD oil for fibromyalgia

Having been seriously ill multiple times in a short period of time, I have been left with fibromyalgia. A condition that causes chronic pain all over the body and chronic fatigue, I also get nausea, and sensitivity to light and sound. One of my major serious illnesses is having clotty blood, I've reached the stage where the only thing I can do to reduce my risk of clots is  to loose weight. For 2 years I have been trying to loose weight with no luck, loosing a couple of pounds, but puting them back on. Of course doctors, friends, they all think I'm simply not *trying* hard enough. It also doesn't help that due to fibromyalgia and asthma, I can't exercise.
I decided to take a risk and wean off pregabalin as there is some evidence that it can make it hard to loose weight. I was on 100mg twice a day and still in a lot of pain, so this was quite a scary prospect. I reduce steadily down each week decreasing from 75mg, 50mg 25mg and then nothing. Through those four weeks I lost weight every week! Something I have failed to do for two years! I have lost a total of 8lbs in four weeks due to weaning off pregabalin, but the pain was unbelievable.
My hands and feet burned to the point it was painful to type, I couldn't cope with daylight at all, every sound was multiplied like one permanent hangover. My whole body ached like I was coming down with the flu. The chest pain was the worst though, I have scars on my heart and lungs from having 50-60 clots and chronic chest pain, it felt like I was having a heart attack 24 hours a day. I longed for bed, but it was like lying on rocks and I couldn't sleep.
Desperate I posted in various places, I was desperately upset, the pain was huge, but I was loosing weight and with it, the risk of a fatal clot was also dropping. A good friend of mine suggested CBD oil and I decided to give it a go.
CBD is cannabinoids and is a *legal* extract that is used as a treatment for many different conditions. Being skeptical, I didn't expect much, but willing to give anything a try, particularly as CBD Brothers were kind enough to give mean free sample.
I popped a drop under my tongue and waited for it to dissolve, the taste is not something enjoyable. It tastes exactly like you'd expect mown grass to taste, not pleasant at all! Soon however, it was all worth it as I felt my body relax and the pain dissolve! I have been taking a drop of CBD oil twice a day and I can honestly say it has completely replaced pregabalin. Of course I'm still in pain, I'm still fatigued,but only as much as I was on 100mg pregabalin twice a day. 
I have no idea how it works, but I can honestly say it does. I'm just hoping the weight continues to come off!

Sunday, 18 June 2017

My heart is breaking

"My stomach pain is 3/10 but the muscle pain is 7/10"

I know what that muscle pain (myalgia) is like, I have struggled with it daily for the last few years, maybe you too know how bad it is. Maybe you have had 'flu and you felt every muscle in your body scream and ache, that's what we are talking about.

But not in my chronically ill broken body, not a friend, but my sweet, funny, kind, teenage daughter.

I know what it is like and I don't know if it makes it better or worse, I know the feeling of sleeping for 10 hours and waking up exhausted. Feeling like your warm, soft bed is full of rocks, feeling like you have run a marathon, when you have only made it to the bathroom. I would gladly double my load if only that my daughter didn't have to go through this too.

We are full of hopes and dreams for our children and those never include chronic illness and suffering. We worry about them getting into trouble, not doing well at school, not making good friends, getting sun burnt or eating too many sweet and getting a cavity. Something we never see is months or years lost to being in bed sick, weekly hospital visits and them getting used to blood tests.

Then she starts to get used to being in pain. I ask her several times a day "How is the pain?" unless I press her beyond answering "OK" nobody would be able to tell that she was really suffering, so I adopted the hospital 0-10 pain score. She lives in between 3-6 out of 10 and only ever gets upset when it climbs past 7. It feels so wrong that a child should be used to pain and able to cover it up on a day to day basis.

Worse than the pain, worse than any of it is when the doctors don't believe you, recently a senior doctor at the hospital took me aside and tried to tell me that my daughter wasn't in as much pain as she said, "She isn't rolling around the bed screaming.."

I heard myself respond a lot louder and more assertive than I meant to, "When you live with pain every single days you don't roll around and scream anymore!" I saw the other doctors around flinch and the senior gave up what he was trying to tell me.

Surely any sane person can realise that you acclimatise to pain,  you might start of screaming and rolling round the bed, but a year later, you wont be shouting out, because nobody is coming to help, so what is the point?

This is what kills me the most, its worse than the rest, the missed school can be caught up on, life can be rebuild, but the experience will forever leave scars on both of us.

Saturday, 25 February 2017

Heart Sink

Trying to talk myself out of a panic attack sitting outside the GP office like a naughty student at the headmasters office. I'm waiting for the paperwork for a transfer to hospital and I am, of course, very scared. There are two ways that my appointments usually go, the younger doctors tend to look a bit panicked, the older ones get that "Heart Sink" look.

If you aren't familiar with the phrase "heart sink patient" well lucky you! Its a rather derogatory term for patients that are seen as a pain in the backside and you get that 'heart sink' feeling when they enter the office. If you google it you will find stories of doctors who have these AWFUL patients that waste their time with their (probably fictitious) idiopathic pain. These patients are never *happy*, never get better, just keep coming back! Before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.

The doctor I saw was less experienced, she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. Still wet enough behind the ears to hope for a more senior person to take this train wreck off her. The obvious choice, of course, being the hospital, they'll know what to do. She is of course making the right decision, anyone this medically complex needs investigation.

I want to make something absolutely clear, this next point is vitally important, please take it in and digest; I don't *want* to go to the doctors and I'm terrified of the hospital. No, I'm not bored, lonely, slacking off something, looking for attention, the *only* reason I would consider going to the hospital is if I *believe my life is in danger*. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (if you don't know what that is, it will kill you if not treated), FOUR times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) FIVE HOURS I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, mentally ill, attention seeker, I was told that I needed to get serious psychiatric help or that I didn't love my kids and wanted to get away from them. That is abuse, it is gas-lighting, belittling behaviour dealt out by someone in complete control of your life. One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting "looks like shes about to give birth!". The hospital is *not* a fun day out for me, it is somewhere that I have nearly died several times and a lot of the time, not in the best care. Not that I'm saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk, they're just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as "heart sink" or "frequent flyers" and cant see them as fellow humans anymore, just a problem to be passed on as soon as possible.

On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. Its not of course, in fact its a relatively new and not cheap mattress, but everything HURTS ALL THE TIME. After several complicated conditions my body has had enough and rebelled, now I have chronic pain and fatigue. That's how you become a "heart sink" patient, you survive. Maybe you get through one particularly traumatic accident, or an all too close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!

Then, a few month or a year later something else happens, you nearly loose your life again. It takes that bit longer to get back on your feet and you don't feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as "over anxious" you become a self fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctors office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you loose all respect from the doctor and become a problem no one wants. An over anxious, crying, hysterical woman with a complicated medical history.

So why do I keep going back to the doctor with constant complaints of fatigue and pain  and other conditions that never get better? Well because, I remain, as a fellow "chronic" said to me, 'defiantly alive'.

2 tired and a toddler


Friday, 17 February 2017

York National Railway Museum


                                                 

 I felt like crying, sat on the train to York, having experienced Manchester Piccadilly for the first time with a wheelchair. After being shouted at for being so inconsiderate as to have a disabled child and not alert each train provider along the way, whilst my preschooler was crying and I was trying to negotiate a wheelchair off a train, I was feeling like we might never venture out again.
 The journey started out pretty negatively, got to the station and realised our local station has no disabled access, that is, they have a ramp upto the ticket box, but you can only get on the trains in one direction. To access the other platform you have to cross a footbridge. Through the kindness of other passengers we managed to get to our train. Am I out of order in thinking that in 2017 there shouldn't be anywhere that doesn't have disabled access? Train fares are ridiculously expensive and will only continue to rise, yet a disabled person cant access a train without prior booking and going to a larger station to ensure they can be "accommodated". Maybe I am just spoiled, living in Greater Manchester with it frequent, disability friendly bus services. I defy any CEO of a train company to go out with two kids, one in a wheelchair and not despair at the state of the railways. 

York National Railway Museum was lovely, free to enter, but you must go past the tills and the eager staff ask you for a suggested donation of £5 each. Most things are on the same level, a few ramps and one part where you have to use lifts. But I didnt need to get kind hearted blokes to carry the wheelchair up and down steps, so it was vastly superior to the actual railways.

My son is obsessed with everything to do with trains and railways, so to see the "real" Stephen the Rocket, Stafford, Blue Mallard, Eurostar was thrilling for him. There is also Hornby railway set up for you to geek over. The shop sells wooden railway, Thomas and friends Take N Play and Hornby. My son also wanted a "Stephen the Rocket" badge to show off at nursery. Maybe it takes a special kind of person to want to take the trains to see trains..? Nah.




The Buffet Car sells a variety of food in the theme of... a buffet car. Staff were lovely and helpful, helping me by carrying my tray for me and happy to assist with choices. My daughter got a hummus and veg butty with chips and couldnt finish it. I was stuck with just chips, as usual. They had soya milk for coffees though, which is a big plus! 

I have to say for balance that on the way back the conductors were very helpful and were more than happy to help me on and off trains with the wheelchair and a toddler!

 Maybe it just depends who you get working on your train and their mood? 

Perhaps some of the staff could do with some disability and inclusion training? 

Or maybe they were just dicks? 

2 Tired and a Toddler.