Supporting May 12th #MillionsMissing Protest

Together we are stronger.

I have a big mouth, I have always be able to speak my mind & voice my opinions.

Since I was diagnosed with ME that has stopped in a lot of ways but I’m going to start shouting a lot !!! I’m going to be shouting about making a difference to the lives of others.

I have set up a website

http://alishawhittam.com/

It will tell my story , our stories and the challenges we face every single day . It…

Hey friends,

A few days ago, I posted that I was going to start being more open online about my illness. Today, someone sent me an article from npr that - when I read - I broke down and just started crying. One if the lead researchers at Stanford has an adult son who is affected by this illness, which is fueling his passion for answers They believe they are making headway (details in the article at the end), but the answers may be more than a decade away.

The article comes on the tails of this documentary Unrest (trailer above) and the momentum Jen Brea (the director and star of the documentary) is driving for this illness. She is an absolute bad ass by the way.

I’ve been in contact with Jen, and she seems excited to speak to me. I hope to have some resources directly from her to share with you all soon.

My best friend (who also happens to be someone I lived with for 4 years) sent me this video a day or two ago. It made him cry because he finally feels like there is hope and like I am not alone anymore. That’s how big of a deal this all is.

I’m having a pretty tough time right now physically. I’ve mentioned to some of you that it’s getting pretty bad, and I plan to make a more robust post with details about my experiences and resources (especially those that Jen gives me), but I wanted to share this video and the article because I am so excited. I feel hopeful for the first time in a long time. I am actually going to try to get into this program at standford where they are doing this testing. I understand there is a very long waiting list, but a decade is probably longer. And I’ve already lost a lot of my 20s to this. I might sound whiny, but I am so ready for this part of my life to be over. And I’m willing to do a lot to try to make it happen.

You can help. By watching this trailer and then the documentary, you add to the “awareness numbers.” The more awareness, the more pressure for funding (as we are seeing this year) and funding=research=help. BONUS: help=less 💩 emojis from me.

ME/CFS is known as an invisible illness, because often we don’t look sick and standard medical tests often come back normal. But you don’t have to look far to find abnormalities.

Orthostatic intolerance (being unable to tolerate being upright) is a common feature of ME/CFS. It shows up as either elevated heart rate (me) or drop in blood pressure when upright. It’s one of the aspects of autonomic dysfunction associated with the illness.

I’ve started wearing my HR monitor again, after a long hiatus, and the trace (showing beats per minute) from yesterday tells a story: lying in bed resting before visitors arrived for Dad’s 70th, going out to greet visitors (initially standing up, but then needing to sit down after a few minutes (you can see when I sat down)), then sitting chatting to relatives as my HR slowly creeps up, until I can’t sit up anymore and need to go back to bed.

I went back to bed, and rested for about 45 mins before going out again for the singing of happy birthday and cake cutting  (but I forgot to turn the app on, so didn’t record the HR data for my second trip), but my body hadn’t recovered from the previous trip, and I didn’t last as long. The second time, I crashed halfway through eating my cake (couldn’t speak much, was zombie-faced, had difficulty walking and needed help getting back to bed). Most people don’t usually get to see that side of the illness.

Research has shown that people with this illness don’t make energy properly, and we need to keep our HR under a safe limit (which, for me, should be around 105bpm) to avoid going into energy deficit and triggering payback symptoms. Clearly, I didn’t do that yesterday!

So, today, most of the day I’ve been in pain, have had difficulty moving, brain has been mush, my temperature regulation has been off (I’ve been feeling too hot, despite it being winter and the heater not on very high). I’ve spent the day lying flat and am only just starting to be able to sit up and type now.

I’ve had enough of constantly feeling like I haven’t slept for a month as soon as I open my eyes. My eyelids feel like lead and my throat is reminiscent of the sandpaper I used to use in my crafting projects.

I’ve had enough of feeling my body ache before it’s even moved an inch. I stretch, and my joints scream in unison. This will repeat for the rest of the day, the percussion that underlines my days, beat by beat by beat.

I love my room. It’s my safe place. I can stay here. I can walk around when I can, open the windows and let the sun caress my face.

I hate my room. It’s my prison. I see the same view every day. I experience the weather through windows. I can see all sorts of people, walking, running, driving… living their life as I once did. I can hear laughter sneak into my room and bore into my brain, reminding me of all that I’ve lost. My cell encourages people to stay away.

I’ve had enough of the fact that the simple act of washing my clothes can take days as a time. I’ve had enough of picking between washing my hair or going outside. I had enough of being bed bound for the next 2 days after doing any menial task. I can’t look after myself at all.