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Example of a cyst in the spinal cord |
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Example of a cyst in the spinal cord |
As much as obviously I wish this was not the path my life had taken and I wish I did not have this illness, it is important for me to reflect on the good that has come out of it. It has helped make me the strong person I am today. It has taught me that even in your darkest hours when it seems like the end, there is light. It has taught me there’s always something worth fighting for. I have helped write articles, volunteered as a Beat Young Ambassador, done presentations to doctors, nurses, teachers, school children about my story and eating disorders, set up a youth group for teenagers struggling with mental health problems and now I work with a university teaching on their Child Mental Health course and am able to educate students and future healthcare professionals about Eating Disorders. All these things show me that this hasn’t all been worthless. My illness, my battle hasn’t been for nothing.
"On average, 149 weeks pass before those experiencing eating disorder symptoms seek help. That’s almost three years, 37 months or 1,043 days. On top of this, in a YouGov survey conducted for EDAW, more than one in three adults (34%) in the UK, who gave an answer, could not name any signs or symptoms of eating disorders. Find out more about the signs of an eating disorder click here.
We know the sooner someone gets the treatment they need, the more likely they are to make a full and fast recovery. As well as campaigning to improve the services available, we recognise that we must raise awareness of the signs and symptoms of an eating disorder and encourage and empower people to take action now – no matter how long their symptoms have been present."
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© yourachingart_cfs |
The onset of PEM typically takes 24-48 hrs. Today's PEM is from Thursday's seizures."Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity.PEM is a highly characteristic clinical and diagnostic feature of ME/CFS. In some respects, PEM is an illness within an illness." - M.E. Association
"PEM causes intense exhaustion as well as an upswing in other symptoms that last for at least 24 hours after physical exertion. That may not sound so unusual to those unfamiliar with it — after all, we all need time to recover after a tough workout.
When it comes to PEM, though, little about it is normal or familiar to people without ME/CFS.
It's not just about overused muscles or needing a little extra rest.
PEM can range from moderately stronger-than-normal symptoms to completely disabling. In a mild case, the person may have extra fatigue, achiness, and cognitive dysfunction. In a severe case, PEM can bring on intense flu -like symptoms on top of extreme fatigue, pain, and brain fog strong enough that it's hard to even form a sentence or follow the plot of a sitcom.
That's hardly what the rest of us go through after a hike or a trip to the gym. Also abnormal is the amount of exertion it can take to put people in this state.
As with the severity, the exertion needed to trigger PEM theories case-by-case. For some, it might kick in after a little bit of exercise on top of a day's regular activities. For others, is incredible as it may seem, it can just take a trip to the mailbox, a shower, or sitting upright for an hour." - Very Well
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The finished result |
Stickman Communication © by Hannah Ensor |
"What is hemiplegic migraine?Hemiplegic migraine is referred to as a “migraine variant”. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion. This can be a frightening experience for the individual as these symptoms are similar to those of a stroke. This weakness may last from one hour to several days, but usually it goes within 24 hours. The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent." - The Migraine TrustI usually get a pre-migraine headache or warning, which is when I take my Sumatriptan which is a migraine medication. Hemiplegic Migraines can be quite scary, both for me an other people. I hate loosing control of my body and speech and the pain can become unbearable at times - every tiny movement of my body is like a huge stab and I throw up (sorry TMI!) and the smallest noise or glimpse of light is horrendous. I've sort-of gotten use to attacks now, and have a good management plan though I'll never grow for of them that's of sure!
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© Migraine Action |
* This is what I wrote on my Facebook page when i shared the link to the petition*"I have FND (Functional Neurological Disorder) - this is where the brain messaging system is impaired and doesn't;t function properly 'the hardware (body) works, but the software (brain) doesn't - it is such a debilitating illness and can be as debilitating as other neurological illnesses such as MS and Parkinson's. My symptoms affects me 24/7/365 without a break. Far too often clinicians don't see FND as a diagnosis but simply as just a name for medically unexplained symptoms, or even that people like me aren't really ill at all. It took me 4 years to get to see a specialist neurologist in London who specialises in FND. Local "care" is non existent. I have to pay for carers because my illness is seen as non existent and I am desperate. Currently I'm waiting for funding for a bed in a specialist neurology rehab centre in Leeds - one of few specialist services in the country and this centre only has 4 beds for out-of-area patients like myself. Far too often clinicians have never heard of FND and sometimes are unwilling to listen to patients when we try to educate them about FND; when we try to help them to help us. As it's the brain that s affected there are a multitude of systems in the body so it is a complex condition to treat, especially when it isn't even seen as an illness in it's own right. My GP has to justify my prescriptions for an illness that I don't have but without those medications I would be left is a worsened state of suffering. I have daily seizures, my muscles are often in chronic spasm, my mobility is impaired, my bowels and bladder are affected, I am in constant pain and experience extreme fatigue amongst other symptoms. FND is a real illness, I know because I life with it every day. Currently there are no NICE guidelines for FND which leave patents and clinicians in the dark when it comes to treatment and there is a distinct lack of specialised care and treatment options. Things have to change. Even if you don't have FND can you please take a few moments to sign this petition for people like myself who are living in the dark with underfunded, insufficient care and treatment."