Tuesday, January 24, 2012

"I Never Thought My Sister Would Die...from ME" by Roisin Wilson

I was reading through Co-Cure's latest news and saw this article from the Irish Times. For anyone who believes this disease is not serious read on...


MY HEALTH EXPERIENCE: RÓISÍN WILSON Sophia’s nervous system had been ravaged by ME
BEFORE MY sister Sophia got Myalgic Encephalomyelitis (ME), I had subconsciously developed a disparaging view of the disease. The little I knew about ME at the turn of the century was from how it had been portrayed in the tabloid press.
ME had been painted as some kind of luxury illness, labelled “yuppie flu”. It seemed a very boring disease and I can’t say I had any interest in it.
I had got the impression ME was kind of a sabbatical illness, an excuse for a few weeks off work to recharge the batteries. So when my mum told me Sophia had ME, I wasn’t that worried.
Sophia, two years my junior, had had meningitis before and malaria twice. What was ME compared to those bad boys? My feisty sister could easily whip this lily-livered ME.
I was living in New York at the time and on transatlantic phone calls with our Irish mum, she would tell me how my sister had had to leave her London life because she was too ill to look after herself. She told me Sophia was getting worse and that nearly everything hurt my sister.
I thought my mum was exaggerating; how can everything hurt Sophia?
Light hurt my sister, noise, smells, vibrations, the list went on. My then 26-year-old sister had almost zero energy and had to lie in a blackened room day and night, wearing a blindfold and earplugs, in constant pain.
If that wasn’t bad enough, the doctors treating her said this disease was a mere “wrong belief”, despite doing no physical tests on their patient. And just for good measure they called my mum an enabler, for believing her youngest child was genuinely ill and threatened to remove her as Sophia’s carer.
I listened to what my mum told me, but I couldn’t really take it in. How could Sophia be so desperately ill for months on end? The ME my mum described was like nothing I had read about on the net. ME is often referred to as Chronic Fatigue Syndrome (CFS) and the information my Google searches revealed at the time did not correspond with what my mum was describing about Sophia. I believed my mum, but I could not grasp just how ill my sister was.
By the time I came back to Britain, I was still none the wiser, but I was more clued up about telling people about my sister’s disease, or rather not telling people about it.
Upon hearing of my sibling’s ME, people’s reactions ranged from “Is that all? I thought you were going to say something serious from your tone of voice”, to polite “humour-her” nodding and baffled, sympathetic faces, and then the slam dunk of some responses.
“Maybe your sister has got issues with your mum/dad/whoever,” or words to that effect. “Issues!” I snapped at the last person who suggested that, “Issues! If you got ME from having f***ing issues, then the whole b*****d country would be down with it!”
Not long after I returned to Britain, 9/11 happened. My then husband was in the Twin Towers that day, and with hindsight, I can see I over-reacted to 9/11, because it was on the strength of that, that I decided to become a nurse.
Throughout my three years of nurse training, I didn’t tell a soul about Sophia and the ME. I don’t think I even mentioned I had a sister. I saw how ME was viewed from the other side of the fence and it wasn’t good or accurate. One day during my second year of training, I was on my cardiac placement and telephoned my mum on my break.
She was distraught, because at that very time I was calling her, the police were breaking down the door so Sophia could be sectioned into a mental hospital.
I didn’t know what to do, so I called my brother Shane, who went straight down to help mum and Sophia. I then went back to the ward and couldn’t say anything to anyone.
And it was around that time I nearly cracked. I very nearly told my personal tutor about my fears and concerns for my sister. I was about to blurt it out once when my tutor mentioned that our confidentiality could be broken if somebody was at risk or over something illegal.
Confiding about Sophia could have me seen as an enabler, it could have jeopardised Sophia even more; I couldn’t risk it. I stayed schtum and blamed my tears on PMT and the stress of course work.
Visits to Sophia were rare and precious, they had to be in the dark with only a smidgen of light. Her body may have been torturing her, but Sophia’s mind was still all there. Those 13 days in the mental hospital had done irreparable damage to my sister, though, she went downhill from there.
I never imagined Sophia would die from ME, I thought she would outlive the lot of us, by years. But my sister became the first person in England to officially die from ME, a dubious honour indeed.
Sophia was 32 and had been bedridden for the last six years of her life. I was in shock and grief-stricken for months after her death, but in among all the pain, there was a tiny part of me that felt lighter; that tiny light was one of relief, relief my sister was not suffering so unbearably anymore.
The post-mortem revealed the physical evidence of Sophia’s ravaged nervous system, proof at last her disease was of physical origin. Sophia’s death from ME made news around the world, but it hasn’t changed how people with ME get treated in Britain – well not yet it hasn’t.
When Sophia got sectioned, the event was tape-recorded. This profoundly moving audio is included in the award-winning documentary Voices from the Shadows , a film made out of sheer desperation by the family of a girl who suffers with severe ME.
This documentary includes the stories of other ME sufferers and carers, as well as expert medical opinion and facts. This film needs to be shown to as wide an audience as possible.
Voices from the Shadows will literally save lives and spare much unnecessary suffering and bring much-needed understanding about the reality of ME. This documentary urgently needs a way to be seen by the masses. Please go to Voicesfromtheshadowsfilm.co.ukfor more information.
Sophia suffered and died from ME, but nobody else should have to.

Wednesday, January 11, 2012

Treatment Update, Labs, and Prazosin

I've had a couple good days in a row. Yesterday I drove to a grocery store, a coffee store, and took Chelsea to a park for a walk. I had no problems. Then today I woke up saw that we were out of milk and went to another grocery store and got milk. It felt so good to actually be able to be in a grocery store without feeling too woozy. I felt mildly woozy at times but it was brief. I actually wandered down a couple aisle just because I could. I even tested my body out by walking down the cleaning aisle. No problem.

Then I got back and did 4 loads of laundry, folded clothes, and juiced. I'm exhausted now but I'm content.

This was unheard of 2 years ago. Even 1 year ago. I'm going to try my hand at cooking for 5 people and see how that goes. I'm looking forward to it. I hope they like Top Ramen.  :  )

I restarted Prazosin two nights ago. Prazosin is an alpha blocker used to treat high blood pressure. It is also used for congestive heart failure, PTSD, adrenal tumors, and something else that I can't remember.

I'd been waking up every morning around 4 or so with my heart racing, adrenaline surges, and a weird sort of panic. My ME doctor said that when we've been ill for a long time the sympathetic nervous system dominates the body causing symptoms like I described so he prescribed Prazosin.

When I first tried taking it in December I was sick and had that overall severe body pain, blinding pain in my eyes, chest congestion, etc...I didn't know if it was due to the Prazoson or not. My doctor suggested I stop and wait til the virus cleared before restarting.

So far I think this is a great medication. It is helping with sleep and it's really nice not to wake up with that racing feeling. I'm wondering if it might be helping me during the day too because my nervous system is a bit more balanced. I'm grateful that its working.

I've also been doing daily meditation which is also helpful.

I'm no longer on hydrocortisone because the adrenal supplements are helping. Oh, except I am on hydrocortisone for the bleeding. Thankfully it has all but stopped (knock on wood). I really hope it continues and doesn't restart once I stop the medication.

I got an email from my ME doctor saying he wanted to talk to me about my lab results. He forwarded a copy to me and they are whacky. The metabolic panel is all off. I have low globulin levels which I've never had before. One of the things globulins do is help fight infection and low levels suggest immune dysfunction. It could be caused by a number of things, some of which are serious, but I'm guessing its related to chronic infections and a faulty immune system.

Testing also revealed that I have active HHV-6, EBV, and Chlamydia Pneumonia. The testing my doctor ordered was more thorough than I've had before and so the results are solid. I'm still taking Famvir and Valtrex. My EBV levels have come down but not by much.

I'll talk to my doctor about all this next week. I'm interested in hearing what he has to say. I'm thinking if I could clear the Chlamydia Pneumonia (CPN) I could improve my functioning even more which would be awesome. I still believe the CPN is my primary infection because when I crash I feel exactly like I did when I had it back in 6th or 7th grade.

Current Treatment

Partial Methylation Support
Perque B12

Famvir 500mg AM
Valtrex 500mg Twice Daily

Naturethroid 32mg  1/2 AM and 1/2 HS (before bed)

Adrenal Support
Cytozyme AD Neonatal 1-2 pills AM and 1 pill HS
Ashwagandha 1 pill Am and 1 pill PM

Degenerative Disc Disease/Spinal Stenosis
Flexeril 3 times daily
Stretching twice daily

Clonazepam 1mg HS
4 drops Doxycycline HS
200mg Gabapentin
1mg Prazosin

Postural Orthostatic Tachycardia Syndrome
Pindolol 2.5mg-5mg AM (as needed) and HS

This treatment regimen is working for me. I may add in antibiotics to treat the CPN. I also plan on adding Bodybio Phosphatidylcholine to clear toxins.

My doctor wants to test my adrenal functioning as well as for parasites. He also wants to test me to see if I would be a candidate for the KPU protocol. Apparently people who don't respond to lyme treatment have some sort of deficiency that is treatable. I just have to get the tests done. Hopefully I can do them this week.

Friday, January 6, 2012


The only thing I can do these days is write about all this. Aside from my mom's death I've never been through such a difficult and frightening time. There is so much unknown. I've been encouraged to think about the future and make plans for it. I know its out of concern but the reality for me is the future is too scary. I have to stick with today. That's hard enough. Or the next task.

I'm overwhelmed with everything that needs to be done as well as with everything happening internally. I shouldn't but I miss my ex a lot.

I guess I was in a bit of shock at how quickly things ended and the grief has been hitting me hard these  past few days. Yesterday I stayed in my room and cried off and on throughout the day. Today has been the same.

When I'm not grieving I'm frightened. There are a lot of 'what ifs' to be considered. It's a necessary question with a disease as unpredictable as ME is. What if I have even more improvement? What if I get worse? What if I end up in a moldy place? And then the more practical things like how am I going to physically get myself to various apartments to look at them. I can't yet drive on the freeway although I am encouraged by the improvements I'm having.

I'm also grieving lost dreams. Being around my niece and nephew makes me realize how much I wish I had kids or kid. I'm quiet much of the time I'm around them but I enjoy watching them and I love just being around them even if we don't talk. I'm mindful that I'm a guest and want to respect their space. I remember when we would have various people staying with us that at times I just wanted them to leave so I could have my space back.

I received an email from a recruiting agency today saying they had a position that would fit my qualifications. Then the recruiter left a message on my phone saying they really wanted to talk to me. Why now? The last time I turned in a resume was 2007 after my post-doc. I looked up the recruiting agency and they are for real. I don't know what to make of the timing. It feels almost like a cruel joke. I would love nothing more than to be able to work. It would solve so many problems if I could work right now.

I've been reading Pema Chodron's book "When Things Fall Apart". She encourages being present with feelings rather than running. The first chapter about fear was quite helpful yet also difficult to do-to turn and face one's fears rather than running from them. It might ultimately be helpful but right now I'm not liking it so much. Because I can't distract myself like I used to I have no choice but to face my feelings. Truly the only pain we can avoid is the pain of avoiding pain.

I was trying to organize some things and found a book my Aunt had sent me after my mom died. It's called "Praying Our Goodbyes". Just the title made me cry. When I opened up the book a card from one of my cousins fell out. She'd written it after my mom died. She said that she and my mom had a conversation at my Uncle's funeral and that my mom mostly talked about how proud she was of me for facing some things that occurred about 4 years prior to her death. It both felt good yet painful to read that. I realized how much I'm missing my mom right now. I think that's partly what the grief was about when my sister treated me to a haircut. It's something my mom would have done except she would have taken me shopping for a new outfit.

And the health stuff. I'm still having bleeding which means I'm no longer responding to the anti-inflammatory medication. The bleeding has decreased which is good but after the emergency room visit the treatment stopped the bleeding completely until I finished the treatment-then the bleeding started again so surgery is looking more likely. I decided to be brave and look up the procedure my doctor talked about so I know what to expect and how long the healing will take. It doesn't sound all that fun. I am concerned about going under general anesthesia at this time in my life. Things feel so painful right now that I'm not that sure I'll wake up again. I've lost so much and have had to get back up so much that I don't know that I have it in me to get back up this time. I don't like the bleeding though. If I continue to bleed throughout the weekend I'll get the name of a surgeon and have a consult to get things started. I don't have the time to wait around. I need to get on with my life such as it is.

So I'm trying to do what I can to heal my soul. It would be good to have my own place. I got an email from one of my best friends in high school and college saying they had a condo for rent. She and her husband live in Las Vegas which is where the condo is. I can't afford it but the thought was nice. She invited me out there for a visit to see if I liked Las Vegas.

The other thing weighing heavy on my heart is it looks like I won't be able to have Chelsea with me. It's heartbreaking. It's almost as if she senses something because she is sticking so close to my side even coming in to the bathroom and laying down on the rug. I have to find a way to have her with me. I can't imagine having her heartbroken one more time.

Intellectually I know this is what I need to do-feel everything. It's the only way through. I think the part that's scary is I've never been in this position before where I'm dependent on the government for income and that I have to depend on people for certain things.

Wednesday, January 4, 2012


I don't write much about things I'm grateful for even though I practice gratitude every day. Going through the break up and being left with few possessions, clothes, etc..has led me to feel incredibly grateful for the things I do have. I also feel grateful for my family, the weather, the improvements I've had, and Chelsea.

My sister treated me to a hair cut at a nice salon. I haven't had a really good cut like this since I got sick. I remember my last good hair cut. It was the last day I was able to practice on December 15, 2007 (I'd been sick since July).  At the time I thought it would only be a three month break and "once rested", I'd be able to return to my practice. I had no idea what was ahead of me.

I used to love going to a fancy hair salon in San Francisco. I left pleased and would also treat myself to really nice hair products.

I loved getting my haircut today. The stylist was excellent and easy to be around. The weather was beautiful and I was physically able to get the haircut. Because my sister paid for the cut I was able to purchase some really nice hair products. It felt like such a treat. I left happy and felt like the experience was a much needed boost to my spirits.

I also think it reminded me of my old life and consequently brought up some grief. I was surprised at how tearful I felt after. I think having my someone do something kind for me was moving in and of itself plus the hairstylist was kind and easy to be around. My self-esteem has taken such a hit and is so low that when someone says or does something kind I want to cry.

I feel like I've had a few past lives. There was the one before my mom died and then after, before my PhD program and after, before getting sick and after, before the break up and after. While I appreciate the opportunity to have different life experiences I don't want to have anymore before and afters.

I had a GI appointment today because the bleeding has continued to get worse following the colonoscopy. We're going to try one more month of a large dose of anti-inflammatory medication (hydrocortisone) and if that doesn't work I'll need surgery. I really, really do not want rectal surgery.  He explained a couple different procedures and both gave me the heebie jeebies, particularly the one where they'll need to use staples to close something off. I can't remember what exactly it was as I went blank once he mentioned referring me to a surgeon if the bleeding didn't improve. I'll see him again Feb 15th. Hopefully the treatment will work.

The good news is he was able to remove all of the premalignant polyp. It was on the right side of my colon. It's not surprising because so much waste has been sitting in my cecum for long periods of time resulting in a distended cecum and consequent pain. The lower right quadrant pain I've had since getting ill was not ovarian related but a result of a faulty autonomic nervous system. The dysautonomia makes it difficult for waste to pass through the colon like it should. Add in the very high risk category I'm in for developing colon, ovarian, or breast cancer and its not surprising at all that I had a premalignant polyp.

To address this for the past 5 months or so my GI doctor had me reduce the amount of fiber I was having and then added in taking Miralax every night. I've had very little pain (knock on wood) since doing this.

It feels like this disease has attacked all of my organs (as well as my nervous system) one organ at a time.  First it was the muscles in my gallbladder not contracting like they should, then problems with the biliary tract, my liver, the gastritis, my heart, and now my colon.

One of the main reasons I don't want surgery aside from the discomfort is I don't want to lose the improvements I've gained. For example today I had the MD appointment and then 2 hours later a hair appointment. One or two years ago a doctor appointment would have had me in bed the rest of the day or when at my worst, a few days in bed.

I'm still looking for a place to live without any success. I simply do not have enough money for rent. There are some share rentals in my price range but I can't find anyone who is interested in living with someone who is disabled and home all the time. I thought about not disclosing that in my emails but decided that wouldn't be fair to the people living there.

It's really rough times for me but I'm trying to focus on things I'm grateful for as well as trying to work on changing certain thought patterns.