M.E Awareness Week

LadyMorticia

I'm not sure if this is the right section. Sorry.:o

From 8th-14th May is M.E Awareness week and I was wondering if anyone here will be doing anything for it?

I can't do alot at the moment so I'm not sure what to do. I've been sharing videos about it on my Facebook and I've written a Facebook note about it (I would share it here, but not sure if that's allowed?) but apart from that I'm at a loss of what to do.

I was thinking about a sponsored silence but OH didn't like that idea.:eek: :rotfl:

Jojo_the_Tightfisted

LadyMorticia wrote: »

I can't do alot at the moment so I'm not sure what to do. I've been sharing videos about it on my Facebook and I've written a Facebook note about it (I would share it here, but not sure if that's allowed?) but apart from that I'm at a loss of what to do.

I'm interested - if you would prefer to keep it private, then perhaps you could PM the link?

LadyMorticia wrote: »

I was thinking about a sponsored silence but OH didn't like that idea.:eek: :rotfl:

I think if mine were round at the moment, he would love the idea. Mind you, he is at his mother's, so it would probably sound like his dreams had come true if she did it :rotfl: :rotfl: :rotfl:

LadyMorticia

Jojo_the_Tightfisted wrote: »

I'm interested - if you would prefer to keep it private, then perhaps you could PM the link?



I think if mine were round at the moment, he would love the idea. Mind you, he is at his mother's, so it would probably sound like his dreams had come true if she did it :rotfl: :rotfl: :rotfl:

I don't mind not keeping it private. The whole idea is to raise awareness for M.E and I want it to reach the masses. I'll put it in a post below this one.

My husband likes it when I talk. Apparently when I'm quiet he gets lonely.:rotfl:

LadyMorticia

M.E Awareness week runs from 8th-14th May and I would like people to be more aware of this horrible debilitating condition.

I'm a M.E sufferer myself and it's a horrible condition to have. On the few/rare days we can go out, we may look okay, but you have no idea how we feel and how we cope in our own homes. Everyday is like a constant battle. The exhaustion is crippling. Think of exhaustion and times it by 1000 and you're still not even close to how we feel.Many of us have to use walking aids or wheelchairs just to get around.

We suffer from cognitive difficulties - having a conversation 10 minutes ago and not being able to remember it at all, brain fog.
We suffer from extreme aches and pains (for me it feels like my whole body is being ripped apart). Many of us are sensitive to heat/cold and sensitive to bright lights and noise.
No matter how much we sleep, we are still exhausted.

Some other symptoms include:

• Irritable bowel, abdominal pain, nausea, diarrhea or bloating
• Chills and night sweats
• Brain fog
• Chest pain
• Shortness of breath
• Chronic cough
• Visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
• Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
• Difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
• Psychological problems (depression, irritability, mood swings, anxiety, panic attacks)[37]

M.E is not "lazyness". M.E is a chronic illness.

M.E is a condition that affects thousands, yet it's a condition that alot of people are ignorant of, saying such things like "Everybody gets tired", "All you need is exercise", "Some fresh air will wake you up", "Stop being weak". These things do NOT help us. If anything, they make us feel downtrodden and useless. M.E is not just normal tiredness. M.E is chronic exhaustion. It's sometimes not having the energy to even go to the bathroom, or sometimes to even eat or lift your head up. Sometimes it's so painful to move.
Some of us get extremely painful headaches, chronic sore throats and swollen glands.
We can do something one day, and we'll be bedridden for a week or two afterwards. We are NOT lazy. We are ill.

M.E is a condition that needs more awareness and the ignorance needs to stop. If you don't understand something, at least try.

It's not all bad though. M.E has enabled myself and many others to make friends with other sufferers - people who understand what this illness does to us and knows just what it's like.

I doubt I've explained things properly here (brain fog is a !!!!!!) but for more info you can visit the following links:

http://www.meassociation.org.uk/?page_id=1685
http://www.afme.org.uk/
http://www.ayme.org.uk/

Thank you for reading.

sunnyone

I have every one of those symptoms LM, I think many disabilities do share symptoms but it frightening how many I tick all the boxes on and I cant be alone.

If we cant support each other, who can?

LadyMorticia

sunnyone wrote: »

I have every one of those symptoms LM, I think many disabilities do share symptoms but it frightening how many I tick all the boxes on and I cant be alone.

If we cant support each other, who can?

I think alot of illnesses can share symptoms and from my experience everything else is ruled out before giving a diagnosis of M.E and sometimes there's triggers for it and people can pinpoint the start and sometimes there is no known cause.:eek: My M.E was triggered by the glandular fever I had in 2009.:(

Whilst M.E is a horrible illness, I have made such great friends from forums and support groups online and I agree with you. If other people in our position can't support us, then who can?

luminated

Thank you Lady M for the excellent post.

I also have M.E. and have suffered for many years. I have always said it may never kill me but it could bu**er up my life which it has.

I guess I am a moderate sufferer but it can be moderate severe. It made me have to retire early 3/4 years ago and I have managed to eek out savings and have not claimed any benefits butcan see this may happen before I reach my OAP in 2013. BUT I have been looking at claiming DLA but everyone says it is difficult to get. Although I am lucky (what am I saying lucky!!!) in that I have other health issues as well which affect my mobilty.

My wife drops me off near to the shops and I take my time over a coffee or two while she spends time looking around. Although I have started looking at shopmobilty but keep saying to myself this is for those who can't walk. My wife has to remind me my limits are quite poor before I have to sit down.

Anyway I am waffling and again thanks for taking the time to spread the word.

luminated

sunnyone wrote: »

I have every one of those symptoms LM, I think many disabilities do share symptoms but it frightening how many I tick all the boxes on and I cant be alone.

If we cant support each other, who can?

No you are not alone as I also can tick every single box. AND I bet there is a lot more who can.

LadyMorticia

luminated wrote: »

Thank you Lady M for the excellent post.

I also have M.E. and have suffered for many years. I have always said it may never kill me but it could bu**er up my life which it has.

I guess I am a moderate sufferer but it can be moderate severe. It made me have to retire early 3/4 years ago and I have managed to eek out savings and have not claimed any benefits butcan see this may happen before I reach my OAP in 2013. BUT I have been looking at claiming DLA but everyone says it is difficult to get. Although I am lucky (what am I saying lucky!!!) in that I have other health issues as well which affect my mobilty.

My wife drops me off near to the shops and I take my time over a coffee or two while she spends time looking around. Although I have started looking at shopmobilty but keep saying to myself this is for those who can't walk. My wife has to remind me my limits are quite poor before I have to sit down.

Anyway I am waffling and again thanks for taking the time to spread the word.

Hello luminated.:wave:

I'm really sorry that you have to suffer this horrible condition too.:(

R.e. the DLA. There is no harm in applying. I receive DLA for my M.E and mental health problems (I have anxiety, eating disorder and Borderline Personality Disorder). I receive LRM and HRC. I think I was one of the lucky ones because I was awarded first time and then on renewal was awarded the same again. I did send in as much evidence as I could though and was just honest on the form.
The forms can be very daunting though.:eek:

The way I see it is that if shopmobility helps you to stay out for longer or be more independent, then go for it. These aids are here to help us to live our life as much as possible.

I walk with a stick because I have balance problems and hip problems but when my OH and I move out of his parents, I'm going to invest in a wheelchair because walking leaves me exhausted and in pain and hopefully it will enable me to go out and about a bit more (fingers crossed).

You weren't waffling.

luminated

Hi Lady M

I have suffered M.E. for so long I daren't say how long as it would make other sufferers lose hope of getting better. In the early days I was sent to so many consultants, had so many tests and even negative meetings with several 'shrinks'. Thank goodness for BUPA who picked up a very big bill.

My mobility problems are caused susbstantially by other neurological issues but as time goes by I know I am getting worse. I am a man and guess I never moan enough to my GP (but I do to my wife:eek:) but I really am going to have to see him and tell him my legs are badly letting me down. BUT me use a stick, a wheelchair or a mobility scooter would be a major acceptance of my frailty and I guess I am fighting this off as long as I can.:cool: Macho even though my body is alittle knackered?

LadyMorticia

luminated wrote: »

Hi Lady M

I have suffered M.E. for so long I daren't say how long as it would make other sufferers lose hope of getting better. In the early days I was sent to so many consultants, had so many tests and even negative meetings with several 'shrinks'. Thank goodness for BUPA who picked up a very big bill.

My mobility problems are caused susbstantially by other neurological issues but as time goes by I know I am getting worse. I am a man and guess I never moan enough to my GP (but I do to my wife:eek:) but I really am going to have to see him and tell him my legs are badly letting me down. BUT me use a stick, a wheelchair or a mobility scooter would be a major acceptance of my frailty and I guess I am fighting this off as long as I can.:cool: Macho even though my body is alittle knackered?

I've had M.E for about a year and a half but know people who have had it for years. Some things work and help some people and some things don't help another person.
My M.E seems to be going downhill and I spend more days bed bound than out, it seems.

It's really hard to stay optimistic with M.E.

I asked on a forum I'm a member of for people with M.E about wheelchairs and whether they started using one when they felt they were getting worse or whether they waited until they were severe. Many people said they wish they hadn't waited because they felt it would have improved their health, even just a tiny bit. I think sometimes it's hard to admit "defeat" of the illness by giving in, but by the same token, it's sometimes better to give in and get the help as and when you need it in the hope that it may stop things going downhill quite as fast.