Did you automatically sing that title as “talking bout my Generation”? That’s what I was aiming for!
I want to talk about Mental Illness today and the meds I take. I’m not ashamed to say I have Bipolar Disorder but I know there is a huge stigma around having a mental illness and talking about it. There are far too many people who grew up believing you should keep things like that hush hush because it would ruin your reputation, and that of your family if you said anything. People were put away in homes and hospitals who were severely mentally ill, or stories were told about “crazy Aunt Gladys” or “weird Uncle Marvin” and you knew you weren’t supposed to either hear them or repeat them.
Things are changing thank God, and I’ve never been afraid to just come out and say “I am Bipolar” in conversation. It’s a part of me, so why would I hide it? It was actually a relief to finally have a diagnosis because then I knew what those manic highs and depressing lows were all about. Do I like the highs and lows? Sometimes. They can be exciting, and energizing and fun. They can also be ugly and messy and scary. But the overall thing about having BD is that it’s uniquely a part of me. Take it away, and I would be so different. Less courageous. Less outgoing. Less interesting. Less, less, less….
One difficult thing about having a mental illness is the issue of being on medications. What you’re trying to do is balance the chemicals in your brain called Serotonins. Finding the right balance is a tricky business and can sometimes take years. I know people who have been on up to 17 different medications at various times, just trying to find the right combo that works for them. I’ve been lucky in that I was put on Seroquel when I was first diagnosed and it worked well for me for a long time.
It wasn’t until late 2016 when I started experiencing the auditory hallucinations – I could hear music when others couldn’t, and I knew something was going on. I saw a Psychiatrist to rule out any new mental illnesses, and then Dr. Leong recommended the MRI and EEG I’ve talked about in earlier posts. We also decided to switch the Seroquel to something new and that’s when I started taking the Abilify.
I was nervous about taking it at first because of the list of side effects. I am bolding the ones I’ve experienced so far:
Common Abilify side effects may include:
nausea, vomiting, changes in appetite, constipation;
drooling (mild, at night);
a headache, dizziness, drowsiness, feeling tired;
anxiety, feeling restless;
sleep problems (insomnia);
cold symptoms such as stuffy nose, sneezing, sore throat.
Now, why can’t Drug Manufacturers automatically make a drug with weight LOSS as a side effect?? Why is weight GAIN always the big one listed (haha). Seriously…what are they putting in there…hot dogs?? Milkshakes? Okay, I’d take it in milkshake form (I LOVE milkshakes!), but I just don’t understand this. It must be a filler of some kind. Then there’s drooling. What the hell kind of side effect is that??? DROOLING??? Who thinks these things up?
“Do ya think we should make people drool with this one?”
“Oh yeah…we haven’t added that one in a long time. I bet people miss that side effect…yeah, let’s add it”.
*snork* Right! Okay, so now, I’m fat and drooling. How else can we make this attractive? Oh, I know…let’s make me constipated too! And then we’ll make me super tired, but add in insomnia, so I can’t sleep!! Mwaaaahaaahaaahaaahaaaaa
Yeah…that’s about what it feels like. Seriously, I don’t understand why half these side effects are considered acceptable, but we go ahead and take them, because the side effects are worth the overall benefit of the drug itself. And what benefit am I getting from the Abilify? Well for one thing. I have energy again. And an interest in life. I’m not spending 90% of my day sleeping. I’m doing the household chores again. I’m getting together with friends again – socializing. I’m still in chronic pain, but my brain is in such a better place that I’m managing my pain better. Could I go back to work in this condition? No, not a chance. My pain and fatigue still wipe me out, and I can only manage small chunks of all of these things, broken up throughout the day, but the fact is, I am able to do them again.
I don’t know how long it went on for, but most of my days on Seroquel were spent either in bed sleeping or in my recliner, playing on the computer. I would aimlessly shift between Facebook and a select few other websites I frequent, like Pinterest, some contest sites and game sites where I enjoy solitaire or various slot machines (not for real money). I still do that now, but it’s in between all the other things I’ve found interest in again. I also tend to do a lot of online shopping. Too much, and this can be part of my mania cycle of BD as well. My husband never says anything as long as I record my transactions in our financial system. But I’m doing other things like crafting again, and I’m making cards again for birthdays and stuff, and I want to learn to crochet again (I was just starting to learn and then boom!, totally lost interest when I started having trouble with the Seroquel and didn’t KNOW I was having trouble with it).
Now, here is the list of SEVERE side effects of Abilify. Again, I am bolding the ones I’ve experienced so far:
Call your doctor at once if you have:
severe agitation, distress, or restless feeling;
twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs (very rare and only for a moment);
mask-like appearance of the face, trouble swallowing, problems with speech;
thoughts about suicide or hurting yourself;
severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
low blood cell counts–sudden weakness or ill feeling, fever, chills, sore throat, swollen gums, painful mouth sores (I get inflamed tastebuds), red or swollen gums, skin sores, cold or flu symptoms, cough, trouble breathing; or
high blood sugar–increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, weight loss **oh LOOK! There’s my weight loss, but look what I have to go through to get it!! 🙁
Because I have Type 2 Diabetes, I have to be extra careful in taking this medication. I need to check my blood on a more frequent basis, to make sure I’m maintaining optimum blood sugar levels at all times. I currently inject 14 units of insulin at night only and have done so for about 3 years now. If I notice that my sugars are going quite high on this med, we may have to change that up, and that will be hard for me. I like the benefits of this drug, and I’m not sure I want to start experimenting with other medications.
So…what about you dear reader. Do you have a mental illness? Do you talk about it if you do? Why or why not? Do you know other people who experience prejudice because of a mental illness? How are they treated differently? Do you stand up for them? Advocate for them?
It’s a scary world out there for people with mental illnesses. We never know for sure who our allies are or where we can feel safe talking about our lives and what we experience until we start talking to others. I make myself a safe haven. I talk about my mental illness so others know they can be safe and vulnerable around me. If you need someone to talk to, contact me. Anything said to me stays private, even from my husband. If you’re on Facebook, look me up. Same with Messenger. Just put the words There Is Always Hope in the subject line, so I’ll know it’s not spam.
If you have anything you’d like to share here, please feel free to add a comment. Thanks for reading and remember…
I’m so funny! I make me laugh!!
Okay, first of all, welcome back! Now, I’m not sure if I’m welcoming you back to the blog, or myself. Honestly, it’s like I write in 2 month spurts, but I know I have so much I want to say….it just takes forever for me to feel well enough to write, and then I start and then I get tired and then I stop and then I get energy and then I start and then I get tired and then I stop and then I get energy and then…and then…and then. Well, of my 12 followers, and the few others who read this but don’t follow me (and you shouldn’t…I get lost a lot…more on that below too!), you probably know me well enough to know that my Chronic Pain and Chronic Fatigue pretty much rule what I can and can’t do. So, I write when I can, I keep short notes to add here later on when I’m able. Such as my hubby Ray and I heard that a dear friend of ours in Calgary was going through an extremely upsetting situation and facing some immediate financial challenges so daunting, she could lose her house. A mutual friend set up a Go Fund Me account for her, but Ray and I sent her an immediate $500 to help her right away. I wanted to share that because it was such a blessing to be able to help in a bigger way this time rather than just a phone call to tell her we were praying and that she was loved.
So, continuing with the story, I took my injection kit and headed off to see my Physiatrist, Dr. Winston on the morning of March 8th, all bright eyed and bushy tailed. He came into the examination room and asked if I had the Synvisc with me – it felt so clandestine (“Hey Rocco…you got the stuff?”). I gave him the box and told him I had a feel-good story for him about it. I mentioned in my last post that the cost for Synvisc-One is quite expensive – $481 to be exact, and when I had called my benefits provider, they had told me it wasn’t covered so we would have to bear the cost of it ourselves. Fine, no problem.
Well, wouldn’t you know it, but when Ray went to pick up the Synvisc-One kit…our insurance company covered the complete cost, no questions asked!!! I love it when things like that happen…I believe it was God’s confirmation that we did the right thing helping our friend in need, and He provided for us in return. I’ve probably never mentioned on this blog that I’m a Christ Follower, but there you have it…the first time said, but probably not the last!
So, back to me and my knee!! Dr. Winston had another student with him for this appointment, another handsome young fellow named Lee (are all Med students so gorgeous now, like they’re all from TV shows???). Plus, Dr. Winston had a surprise for me…he had Botox for my face!!!! Yay! I wasn’t expecting that, so that was a real treat! He put some ice on my knee to freeze it a bit, then asked me to show Lee where I experience the facial pain, so I pointed to the area under the cheekbone. Then Dr. Winston explained to Lee that they don’t inject the Botox under that area or the muscles would droop. Instead, they do it along the side of the face, right by the hairline, going from the temple to the jawline and injecting approximately six small shots – more like tiny pinpricks, though I could feel the Botox spreading (more like oozing) as he did it.
I’ve had Botox injections done before, in other, more intimate places for muscles and it’s really not painful. So, he went ahead and did those injections while the knee froze, and it was quick and painless. After that was done, he got busy with my knee. The first injection was painful and he pointed out to Lee that you could physically see where I was shutting down because of pain…it was just agonizing!! Dr. Winston then injected some local freezing into the knee area and waited for it to take effect before injecting the rest of the Synvisc-One, which went smoother but still painful.
He told me to stay off the leg for the next couple of days and asked me to call him in a month to follow up, and then see him within 6 months for a follow-up appointment. So…what did happen after a month? Well, I’d say neither of the injections really did what I wanted them to do.
For the knee, there was a tiny bit of pain relief in the beginning, but after the first two weeks, the knee went back to collapsing with the sharp bolt of pain and the ache was there again, just as before. And with the face, I had a major TN flareup a month after the Botox, and have had several more since. I didn’t call to give him the follow up in the month after (probably because I was in the middle of the TN flareup then forgot), but now I need to call him to make an appointment because my right shoulder is giving me major grief. I mentioned it to him at the last appointment, and I’ve been doing the exercise he showed me, but I have a feeling I’ve damaged the rotator cuff and might need a surgical solution.
So, that’s where we’re at with those body parts. In other health news, I’ve had increasing auditory hallucinations, that continued to get louder and louder in my head, and the voices started getting louder as well. I was also able to distinguish the voices more clearly. They’ve always sounded more like “talk radio” but this time I could make out women’s voices and very clearly heard the word “her” being said over and over. At one point, I start having a panic attack, everything was so big in my head. Ray had his own Dr. appointment w. Dr. Leong and I gave him permission to talk about me. He told Dr. Leong that he was worried and Dr. Leong told Ray he wanted to see me asap. I went in the next day and Dr. Leong asked me if I knew why I was there. I answered, “because my husband loves me”. We’ve done a major prescription change…I am completely off the Seroquel for my Bipolar Disorder and I’ve started taking Abilify.
I think there’s been a huge difference already. The hallucinations have settled down, I have a bit more energy overall, I’ve lost a bit of weight, and I think my blood sugars have stabilized as well (it can affect a Diabetic’s blood sugars in both directions so I have to test my blood a little more frequently). I see Dr. Leong again on June 13th so I hope it’s all good news to share with him. It will be the first time in a long time I feel like I have good news to share!!!! And in other news regarding Dr. Leong, he’s leaving Herald Street Health and moving to Mill Bay, BC, which is up the Malahat Hwy heading towards Nanaimo. He’s offered to keep me and Ray on as patients and I’ve accepted. Ray will just take time from work to drive me to appointments as mostly they should be every couple of months for prescription renewals and my Diabetes checkups, so nothing urgent. Ray will schedule his appointments with mine for the rare times he needs to go, so it should work out fine. Dr. Leong isn’t keeping a lot of his patients, so I feel blessed and honoured that he’s offered to have me stay with him.
Okay…enough of my health…let’s move on to what happened on our Seattle trip. I wanted to quickly say that I met up with my dear Chickie, Carrie Ann and she is just as delightful in person as she is online. We met up with two other lovely online friends from our Bloggess Pals group – a group of ladies who all love Jenny Lawson, the Bloggess.
Megan, Kimmy, Carrie and myself spent a few hours at Starbucks near our hotel, talking and laughing like we’d known each other forever!!!! We had the best time and it was hard to say goodbye.
Chickie and Mum!
(L-R) Pam, Kimmy, Megan, Carrie
Carrie then came to Victoria for a week with Ray and I. We went whale watching and shopping and hung out at home watching movies and just had a lovely time together!! I miss her very much. oxoxoxoxox
Carrie and Pam
And how else have I been keeping busy? Why…volunteering of course!!!
I was not able to take part in the “Train the Trainer” course after all. I was having a lot of problems with energy and pain and I knew I wasn’t going to be able to bring my best self to the table, so I canceled with sadness. Fortunately, another opportunity came up for me to help others. I am going to be a Patient Speaker at the Island Health CARE Orientations. These orientations are for people who want to become volunteers just like me. Island Health is the Provincial Health Region I live in. Patient Voices Network is the Provincial Wide organization that I volunteer for. I wanted to make that distinction. I start on Thursday, June 14th by attending a CARE Orientation as an Observer, then attend a 2 hour coaching session in August. Once that’s finished, I’ll be put on the 2018/2019 Speaker Schedule and will speak 2-3 times (possibly more) in the Victoria area.
I continue to sit on the two committees mentioned earlier; the BC Emergency Medicine Network (@BCEmergMedNtwrk) and the PVN Oversight & Advisory Committee (@PatientVoicesBC). My partner with the BC ER Medicine Network is Jolaine Cowherd – she and I are busy updating all of the Patient Information Sheets that are provided there. These are the sheets Doctors give you regarding various conditions when you are discharged; what to expect when you leave the hospital, what to do if your condition worsens after leaving the hospital, etc. These are then approved and uploaded to our network so the information is always kept current. I also designed the sheet that Jolaine and I are using to update the information, as there hadn’t really been anything in place before – I’m not sure there had ever been a review process in place, and that’s why this volunteer position became available.
My role as Co-Chair of the O&A Committee has been a busy and enjoyable one. I’d been working with Ben Ridout, but he has now moved on to a newly created role, more tailored to his overall background, so I have a new partner in crime! Meet Teresa Bissenden! She’s absolutely delightful, as smart as Einstein, adorable as anything and is an amazing facilitator. We have been working together for a couple of months now and as the last thing that Ben and I decided, the main task for Teresa and I was to organize a Face to Face meeting for the O&A Committee. It would be the first meeting for many of us as the term for Committee members is 2 years, and so a great opportunity for Teresa to meet everyone as she starts her new role. So, that’s what we did!
Teresa and I worked on the agenda and then she and her amazing team, including Denise Pinto and Irena Apostu did the hard work of coordinating all the details, including travel, food, etc. As a Certified Event Planner, I can tell you it is a HUGE job organizing these types of meetings, especially when you have people traveling from all around the province, including very remote locations. Everything was done very well…we all raved about Denise’s choice for lunch…delicious Indian food including fabulous Butter Chicken and Rice, and we all worked extremely hard on our agenda items, to successfully end the day with a finished document to present to the Ministry of Health. It was emotionally draining for me and I admit, I cried at the end when we were going around the circle giving our final thoughts (more about that below).
During our lunch break, I was supposed to be giving an interview to a reporter from a Nanaimo newspaper. He had contacted Teresa as he wanted to talk to a “patient partner” to get their feedback regarding the possibility of having WiFi in the Nanaimo hospital and all hospitals. The interview was scheduled for 12:30, but when we called him, he wasn’t around. His colleague offered to do it, but when I asked him if he knew the subject matter well, he said “not really”, so I said I’d rather do it with Spencer, the original reporter who requested to speak with me. I left my home number and asked for him to phone me this coming Monday (tomorrow) so we’ll see what happens. Not sure why he wasn’t available since he was the one who wanted to talk to me, but we’ll find out tomorrow I guess.
And now it’s time for some funny stuff, some sad stuff and some “you have to laugh about it now” stuff. After the meeting, I was so tired and emotional, I canceled my dinner plans and headed to the airport early (I knew my dear friend Donna would understand and she did). My flight wasn’t until late (10pm) so I realized I’d have a long wait – probably 5 hours, but I was hoping I could find a quiet corner and just rest. I hadn’t slept well the night before and actually not for several days prior, as is normal for me. I was also feeling emotional as I mentioned. The news about Kate Spade’s suicide had made me sad and then finding out that Anthony Bourdain had committed suicide that morning (June 8th) had really upset me. It wasn’t until I was home that I realized all day, in the back of my mind, I was worrying how many of the successful ladies I was with all day were struggling with depression and/or suicidal thoughts of their own if any. Would I be able to tell? Could I help?
After leaving the offices where the meeting was held, I started walking towards the Skytrain station to catch the train to the airport. I had already checked in for my Westjet flight and printed my boarding pass, and I only had my purse, a small bag, and my walker. It was pouring rain and I was wearing a long sleeve long sweater, just a thin one, but the station is only a few blocks away…I love that convenience of the offices being so close!!! Except….this time I had a brain fart. My brain somehow thought the station was somewhere else. And I forgot to walk ONE BLOCK and turn right and just kept on walking straight. Did I mention it was pouring? Yes, I did. And I kept walking, thinking to myself, “Self, if you just walk to Burrard and then turn right, go down a couple of blocks, it’s right there”. But Self thought differently, and I turned when I shouldn’t have and then kept on making turns and walking down roads while getting wetter and wetter and more emotional and more emotional until almost 30 or 40 minutes later, Self finally stopped at a Bellhop at a fancy hotel to ask for help, since Pride took a hike a long, LONG time ago. This handsome young man looked at me and asked me if I was okay. Me, with tears in my eyes, replied: “I just need to find the Waterfront station”.
He replied back, very gently and very carefully “it’s right across the street Ma’am. Just go up to the lights, cross at the intersection and enter through the main doors to the elevator”. I’m not sure if he thought I was going to hit him or hug him but at any rate, he stepped back a step, and I just looked at him with tear filled eyes, whispered “thank you” and trudged away, dripping wet. I found the entrance to the station, stopped inside, and then started to sob. Huge tears start falling down my face and now I’m starting to shake. I stood there, just trying to breathe, but more and more tears are falling, so I just let it out of my system…I don’t care who sees me. No one stops but I don’t care. After a few minutes, I feel a bit better so I try to wipe my face with a soggy Kleenex until it falls apart on me. I headed over to the Ticket machine and now I have to figure out how to buy a ticket to the Airport. And I start crying again. Then I spot two Customer Service agents…I walk over to them, still with tears. One of them sees me and with concern asks “may I help you?”. I look at her and then totally lose it.
“I..am…having..a “sniff” …very…”sob”…fifficult..time…”sob”…with..the “sniff” …ticket…ma..ma..”sob”..chine”
Oh, my word. The two of them couldn’t have been nicer or more helpful!!! One of them hugs me and asks if I’m okay. I nod and manage to tell them how I got lost trying to get there and she’s fussing over me and how I’m wet and she’s picking wet Kleenex off of my face and the other is helping me get my ticket and I’m giving her my money and the first one is telling to make sure I get on the YVR train, not the other one and then I’m all set. Honestly, I couldn’t have done it without them. Well, I probably could have, but I’m oh, so glad they were there to help. I was so wet and cold and lost and overwhelmed and emotionally overloaded….a breakdown in the Skytrain station is the last thing I needed!!!
So yes, I made it to the airport, found a quiet spot, rested, caught my plane and of course, made it safely home to the arms of my husband!!!
And to finish up this blog post and get you totally up to date, today, June 10th is my wonderful husband Ray‘s birthday!!! I love this man so much!!! We’ve had a wonderful day together…I went for my first motorcycle ride in 2 YEARS with him – only to Denny’s for his birthday lunch but it was a start. He’s done some gardening, I’ve updated all 12 (and more?) of you and he’s in the kitchen, making something wonderful for dinner. Last night, we were at a Slegg work sponsored event at Western Speedway which was great fun!
So my friends…there you go. Everything that’s been going on for the last couple of months or so. As always, I promise to do better at staying up to date. As always, I’ll probably fail. But…I’m never gone forever unless I die. So let’s hope that doesn’t happen. Because now, when I end with my motto like I always do, it’s gonna sound weird.
There is always hope.
ha ha ha…I kill me.
oh…hello there….how are you? Hope I didn’t startle you…my name is Molly, and I’m from Magic Clean
I’m just cleaning up the mess here…it’s been so long since Ms. Pamela has stopped by, and the cobwebs were getting out of control. I thought I’d better get the place back in order…I hear that she’s going to start writing here again!
How is she? Oh, there’s been so much going on in her life and you know, as a person with Chronic Pain and with her Chronic Fatigue Syndrome, it can be SO hard for Ms. Pamela to keep up with her blogging. I mean, I know she wants to stay regular….oh dear, hee hee hee, that’s not what I meant (although she does want that too!). I mean, she wants to write on a regular basis, but sometimes, it’s just not possible.
Anyway, she WILL be back soon, VERY soon, so let me get back to work here and get the place sparkling clean. You’re welcome to help if you want! Thanks love…grab a duster!
ps: just so I don’t upset anyone with the sweet image of the baby above being used as a duster, here is a proper duster image. I don’t want to offend people on Ms. Pamela’s blog. That’s not the intention at all. Thank you.
Wow! You people are sensitive. For the last time then…
Well, I sure hope Y’all didn’t hold your breath waiting for the next chapter in my story because if you did, you’d be dead now.
I am so sorry I’m such a crappy keeper upper of writing. Partly it’s because I sometimes forget I have a blog and sometimes it’s because I feel so crappy that I can’t write. Mostly the second one. And SO MUCH has happened since I updated last, I hardly know where to begin. So…I’ll begin with the end and then go from there.
So the answer to the big question is YES…I did survive the wide excision surgery for the mole in the Lady Garden and when the pathology report came back, apparently everything that needed to be cut away was removed, so that’s good. Unfortunately, even at this date (March 4th), there is still an area that bleeds when scratched or rubbed – like the scar tissue hasn’t healed properly. I did have problems with the dissolving stitches not dissolving properly, and the scar itself is rather thick, but I think I’ll need to go back to the Gynecologist for her to have another look at why it’s not healing well. It’s disappointing to me because this whole experience has felt “wrong” from the very first time I saw the mole, and I just don’t think the story is over, even though the pathology report came back clear. Let’s just say that for now…I don’t think the Lady Garden is totally tended to and may need some minor pruning still to yield optimum results.
So, what else has been going wrong on that’s been keeping me away from here. Well, let’s see…
First off…HAPPY NEW YEAR!!!! LOL…okay, I realize you’re reading this in March, but it’s been that long since I posted last, so I figured I’d better send out greetings. I truly hope 2018 is a fantastic year for all of you. It’s been a busy year for me so far, mostly with health-related issues, but also with a lot of volunteer-related activities as well. Ray and I had a quiet Christmas and New Year and then BOOM! right back into the busyness of life.
My year started off with a visit to a Psychiatrist, to determine if I was Schizophrenic or not. Wow…what a way to kick off a year, right? The reason for this is because of hallucinations I’ve been having for quite some time. I can’t even remember if I’ve mentioned them on this blog before, but I hallucinate music, and now, more recently voices and other sounds as well. The music manifests itself often as classical, sometimes jazz or rhythm & blues and often country (and I’m not a fan of country music!). I “hear it” on the right side of my brain, but it sounds like it’s only inside my head, not like it’s coming from outside. More recently, I’ve started hearing voices. It’s not just one voice but sounds more like talk radio, or a group talk, but I can’t make out individual words or sounds. I know it’s English, but it’s almost like the people are too far away to hear. And I only hear them on the left side of my brain. There’s no one voice trying to tell me to harm myself or other people, or anything similar….and that was how the Psychiatrist was able to determine quite quickly that no, I don’t have Schizophrenia or any other type of mental disorder outside of my Bipolar Disorder. Unfortunately, he also couldn’t tell me why this was happening.
Dr. Leong, my Family Doctor, ordered an EEG to see if there was some type of complex seizure disorder happening, or a type of epilepsy, or something else that might be causing the hallucinations. It was scheduled for March, so that was great because it meant I could plan a visit to Calgary in January to visit my dear friend Charlotte and to see my wonderful son Troy….something I had meant to do in November for Charlotte’s birthday like I always do, but had to cancel because I was too sick to go last year. It wasn’t a long visit this year, only 5 days, but they were wonderful days, just being together. I miss Charlotte so much….talking every week just isn’t enough. I so wish I was rich beyond all measure so I could have a private jet whisk me there whenever I wanted, but I guess it’s only a pipe dream if you don’t actually buy the lotto ticket!
We had a wonderful lunch with Troy…he loves to see Charlotte as well, and we all non- stop talked for the whole time we had together. My boy just gets more handsome as he gets older…he’s 36 now…and yes ladies, still single. He’s dating, but hasn’t met “the one”.
The other reason a March date for the EEG was good was that it meant I’d be able to attend the Quality Forum 2018 in February. It’s a huge Health Care forum held in Vancouver, which I’ll talk about more in my volunteer activities below.
So, back to the EEG – I had that done this past Friday, March 2nd. My technician was a gal named Regan…she was great! Really knew her stuff, had a great sense of humour, so we spent 90 minutes together while she got me ready, did the test, etc. The first part was for her to take a pencil and mark my scalp in a million places, for where the electrodes were going to be placed. Then, she took a dab of sticky glue and glued the electrodes to my scalp and to a few places on my face, finally gathering everything back into one neat ponytail!
After that, she gave me some instructions, such as closing my eyes and spelling my name, opening and closing my eyes, doing some deep breathing for 3 minutes (to a specific pattern, which was REALLY hard at the end – I was practically gasping for breath!!), and then towards the end, she placed a very bright light near the bed and told me that I would need to open and close my eyes at her command, but when they were open, I could look down at my feet and not directly at the light. That was great, except it was bright like a strobe light and I immediately got an ocular migraine, with the zig-zag pattern, but no pain. It’s not a big deal, and I know it only lasts for 30 minutes, but I was really hoping it wouldn’t happen. Oh well….could have been worse. Then the test was over, and the time had come to remove the electrodes and to clean the goop out of my hair. It actually wasn’t too bad…the stuff felt more like a hair gel than anything. My hair is quite long and straight…the stuff would have worked better on someone with short hair. She said the results would be to Dr. Leong in a week, so here’s hoping there are some answers. The last time I hallucinated was 2 days before the test and she said that things can be picked up even a week before, so if the brain was going to be able to show a problem, it would. Cross your fingers!!!!
I guess the blessing with these hallucinations is that it’s really more inconvenient than anything, but sometimes it all gets really really loud in my head and then I start panicking. The last time it was like that, I put my headphones on and watched 2 movies, trying to drown them out and it didn’t work and I got really freaked out. I found out later, I could actually call the Crisis Line and they could send a team out to help determine how to best help me at that time, so that’s a relief to know for the future. Mostly though, it’s just music in the background of my brain, and I just need to ask Ray for confirmation that it’s happening.
So, there’s been that to deal with. And then the problem with my left Achilles Tendon becoming inflammed has become more of a problem than I first thought and is affecting how I walk, which is causing pain in my new hip joint. I need to go for physio, but I just can’t seem to work it into my schedule, because it seems like every time I want to try and book it, I’m feeling like crap. There’s a physio place within walking distance, but of course, walking hurts, but if I try to take the bus, I still have to walk about the same distance to get to the bus depot. If I use my walker, it’s better than just the cane, so I’m just going to have to buckle down, set a date and go, whether I feel like crap or not. And as for the feeling like crap, that’s coming from all my normal pain issues, plus the added pain from my right knee, that is still collapsing under me with that sharp bolt of pain, even when I have the brace on (which I wear during all waking hours), plus I’m having frequent Trigeminal Neuralgia flare-ups that are just agonizing (in addition to the pain being felt in my face, it’s causing spasms in my esophagus now as well), AND I’ve developed major pain in my right shoulder and the right bicep/tricep muscles for no reason I can determine. Apparently its Frozen Shoulder according to my Physiatrist, Dr. Winston, and he was telling me that my shoulder capsule is affected by almost 50%. He showed me a stretch to do (while working me over) and holy was it ever painful. I AM SO SICK OF MY BODY BREAKING DOWN!!!!!!!!
Seriously, it seems like every time I turn around, something else in my body is going wrong. I hate complaining; that’s just not the person I am, but this blog is where I vent and you, my unfortunate readers, get to listen. It’s just so frustrating!!! I am hoping for some relief next week though. I see Dr. Winston again on March 8th, and he’s going to do a knee injection for me of a product called Synvisc-One – it mimics the fluid naturally found in the knee and if it works for me, should help relieve some of the pain I experience from my osteoarthritis. I have NO idea if it will make the collapsing sharp bolt of pain go away, but it would allow me to go with Ray on rides on the motorcycle again and to not have knee pain 24/7. It would also stave off a knee replacement as well. It’s a 2- Injection process…1 injection every six months. We’ve checked, and our insurance doesn’t cover it, so we are paying almost $500 for the cost. I should ask Dr. Winston if there is a similar product for the hips as my left hip will need to be replaced in a couple of years as well. I am also hoping he will have some Botox in stock to inject in my face where I experience the worst of my Trigeminal Neuralgia flareups, in the hopes it will either stop them, or slow down the frequency. I’m waiting to have an MRI done (for my hallucinations and for the TN as well) and then I’ll be able to get a referral to a Neurologist to discuss having the Microdecompression brain surgery to “cure” the TN. It’s a brain surgery where they go into the skull, and put a sponge between the Trigeminal nerve and whatever it’s touching, so it stops firing off all the time.
Plus in addition to all that, I’ve been having some issues with my Gastroperisis which has been making eating difficult, and my Chronic Fatigue has made doing everything and anything soooooo difficult because I’m sooooooooo freaking tired. I can (and have) slept for days on end, getting up only to pee and MAYBE eat something, but I wake up even more tired. When I have had some energy, I’ve been trying to stay active with my volunteer commitments and wow, has there ever been a lot going on there!!!
VOLUNTEERISM…..(I actually get more than what I give…really!!)
As a refresher for what I’m doing as a volunteer right now, I am currently sitting on 2 different committees, plus getting ready to attend a “Train the Trainer” seminar, regarding Strategies in Patient Oriented Research (SPOR).
The committees I’m involved with are both through my involvement with PVN – Patient Voices Network. One is with the BC Patient Safety Quality Council and my role is with the Oversight & Advisory Committee as Co-Chair along with my partner in crime Ben Ridout. We guide the activities of the PVN as well as ensure that patient voices are included in the planning of PVN initiatives and operations, and that patients’ advice and recommendations are considered in all activities. Also, the Committee and the BCPSQC work collaboratively on patient and public engagement, with the goal of improving and promoting the work of PVN.
My second commitment is to the BC Emergency Medicine Network Team – Clinical Resources Committee, which meets quarterly via telecom from around the province. This committee is dedicated to providing the most comprehensive Canadian repository of Clinical Resources and Real-Time solutions for BC’s Emergency Room Doctors, Nurses or other medical personnel, in one easy to use location online. These resources include Clinical Summaries, ECG’s, Patient Information Sheets, Procedural Videos, plus Websites and Apps. We welcome input, and your resources to continue to grow the information we currently contain – visit us at https://www.bcemergencynetwork.ca/
Because of my involvement with PVN and with the BC Patient Safety Quality Council, I was invited to attend an annual event that BCPSQC hosts, called Quality Forum. At its bare bones, The Quality Forum unites hundreds of people working in British Columbia’s health care system to share and discuss how to improve health care quality and patient safety. It takes place over 2 days, with an additional “pre-day” of events. This year, the choices included either a day-long workshop on Designing and Delivering Sustainable Improvement or a huge array of Health Care workshops that were hosted with the Joint Collaborative Committees. In the evening, there was a ceremony to honour the winners of the Quality Awards, celebrating improvements in Health Care in a variety of different categories (in which I was a judge for this year). After the awards had been given out, the annual evening event started – Health Talks!
Health Talks is sold out every year. This year was no exception and with the lively Stephen Lewis as the Host, each of the eight participants had been invited to answer the same question: What are your hopes for health care?
Rather than just have boring old talks though, the speakers were required to use something called the PechaKucha 20×20 format, where each presentation contained 20 photos and each photo was displayed for exactly 20 seconds before automatically advancing to the next one. Everything had to be precisely timed, so you fit your talk into your 20×20 format, and it was fun to see the creativity that took place as each speaker strove to tell their tale in a way that stood out and connected you. Here is a link to the speakers, so you can find out more about them and what they wanted to share with the audience…each of them was amazing!!!
The main part of QF18 was amazing – not only were there amazing workshops and educational tracks to take part in, there were also incredible Plenary Speakers each day, plus 50 fantastic Story Boards created by various Health Care teams across the Province, each highlighting the amazing work their groups have been working on to improve processes and Patient Care. And food. Oh my goodness, the food!!! I believe there were approximately 950 – 1000 participants at the Hyatt Regency Hotel in Downtown Vancouver, and they fed us all very well indeed, with breakfasts and lunches on each day of the program, including the “pre-day”. No menu was the same and I don’t think I’ve had a fresher salad than I did there, plated before me on Thursday and Friday! Oh, and I was also reminded just how much I love creme brulee!!
Overall, it was an amazing three days of education and fun! I was supposed to fly home on Friday, but there had been snow in Vancouver that morning and my flight was canceled as Harbour Air couldn’t fly their seaplanes out of the harbour because of the weather. BCPSQC took care of booking my hotel room for another night and booked me a flight on Saturday with Westjet to get home. That flight was scheduled to leave at 2pm, but on Saturday morning, I received notification that it was delayed until 4pm. The hotel let me have a late checkout, so after sleeping in, I took the Skytrain to the airport (I haven’t been on the Skytrain since I last lived in Vancouver, so we’re talking back in 1994!!!!) and found out there were even more delays when I got there (plus a gate change. By the time it was all said and done, I finally got home at 8pm – and literally cried in Ray’s arms when I finally saw him at the Victoria airport. I had been gone since Tuesday…it was a LONG time to be away from him and from Dorie cat. I think I crashed for three full days of sleeping (and getting up just to pee, and then going back to sleep…I don’t even think I ate!) before I was recharged again. It takes a huge amount of my energy to do these kinds of trips, but the value of doing them is too important not to.
On the good side though, these Vancouver trips mean I get to see my darling daughter Ashley which is always a treat!!! Doesn’t she look lovely?
I also had the chance to meet with an online friend named Julie. She and I have “known” each other for several years now, but never had a chance to meet before this. She came with a friend to the hotel and we had a lovely time chatting over coffee…and managed to get a great “selfie” together before I had to head back to my next workshop:
So, a HUGE thank you to everyone at the BCPSQC (@BCPSQC #BCPSQC) who sent me to attend this amazing forum. It was wonderful to finally attend, as last year, I was part of the Steering Committee, but couldn’t attend because I was having my hip replacement surgery. I am forever grateful for this opportunity, I learned so much, I had chances to speak up and share my learned experiences, and I made some great new friends as well!!
And if you think all that isn’t enough, I have taken on one more volunteer assignment. On Friday, March 9th, I will be taking part in a “Train the Trainer” program through the BC Support Unit, whose mandate is Advancing Patient Oriented Research. The course material is to teach the Foundations in Patient Oriented Research, as Patients become more involved in their own care, and as healthcare focuses more on Patient Centred Care.
What is Patient Oriented Research? The BC Support Unit defines it as “research that is done in partnership with patients, answers research questions that matter to patients, and aims to improve healthcare”. Further to that, the current services that BC Support Unit offers include patient engagement, research methods support, data access & use, knowledge translation, and training & capacity development through webinars, online resources, and an annual conference. I’m excited to be able to learn how to facilitate the Foundations course, so patients…and really, that means ANYONE in BC, can learn and understand exactly what Patient Oriented Research is, and why it’s so important to them personally, and to Health Care in general.
I know it sounds like a lot, after reading this, but really, my time commitment isn’t a lot. For the Oversight & Advisory Committee, it’s a few hours for every 2 months, and for the BC ER Network, it’s a quarterly Telecom meeting right now, with some reading materials etc. to go through in between. I won’t know the true time commitment for the Patient Oriented Research after going through the Train the Trainer session, but even then, I have control on whether I’m able to co-facilitate a group or not. I’m very careful to not take on too much because I know my Chronic Fatigue Syndrome will cause huge issues if not managed properly. I’m just so passionate about helping make a change in Health Care so people can have better access to care and treatments and stuff like that, it’s hard to say no sometimes!!
Anyway, I do have something coming up soon that I am REALLY looking forward to….Ray and I are going to take the Victoria Clipper to Seattle, WA for a couple of days in April and while we are there, I am going to be meeting a very dear online friend from the United Kingdom named Carrie Ann Fitton!!!! She is my “Chickie” and I am her “Mum”….she’s the same age as my kids, and I’ve kind of adopted her. She’s quite alone in her life…she had a baby boy who died of cot death and her dad, whom she was very close with, passed away last year, so she’s had a lot of struggles. She doesn’t have much family left and no one that’s close really, except an Uncle she sees, but it’s hard, because he enjoys a drink now and then, and Carrie quit drinking just a shade over a year ago!!!!!! I’m so proud of her! She went through some very tough times – she’s got some disabilities and uses crutches to get around (much like me and my cane and/or walker) and she’s short and sassy like me, so we’re quite the pair, but I’ve been a Mum figure to her for quite awhile now and I think that’s been really good for her. Anyway, she is flying to the US in April to visit a girlfriend first, and then meeting us in Seattle. She and I will be meeting some other online friends on April 14th, then Carrie and Ray and I will return home to Victoria. Carrie will stay with us until the 21st and then fly home, and while she’s here, another online friend that neither of us has met is flying in from Toronto!!! Tanya is going to join us for whale watching and other touristy stuff, and I am SO EXCITED ABOUT THE WHOLE THING!!!!!!!!!
So, I think that pretty much brings everyone up to date on where my life has been and is at since I left you hanging at the Lady Garden gate last time!!!! I promise…on my honour, to try harder at keeping things more up to date here. I won’t even bother making excuses. I’ll just try harder.
Thanks for being so patient and reading through this schlimazel. Oh…OH!!!!
Remember…there is always hope!
ps: Edited to add that I just got an appointment date with the Gynecologist to figure out why my surgery site from November’s wide local excision in the Lady Garden still hasn’t healed properly. It’s on March 23rd so further updates will follow. And now I have the song stuck in my head from “The Never Ending Story……”
I am the proud owner of a new hip, and she’s wonderful!!!!!!!!!!!!!!
First off, let me apologize for the huge delay in posting the follow up to my surgery on Feb. 7th. I should have known that a major surgery like this would cause me to be quite fatigued for a while, but I didn’t realize quite how tired I’d be! That being said, the surgery was a complete success and I couldn’t be happier with how things went!!! I’m going to break this up into three parts – Pre-Op, Post-Op, and Home Again. So…here we go!!
I was up at 4am on Feb. 7th, so I could have my second shower with my super scrubbing brush and get all the last minute stuff done before we left for the hospital. We live in Langford which is a small city just outside of Victoria – normally about a 30-minute drive in good weather without rush hour traffic. Unfortunately, good weather is NOT what we’ve been having over the last few months – this is what Ray found and dealt with:
Thankfully, the roads themselves were pretty decent, even for that early in the morning and we arrived at the Royal Jubilee Hospital at approximately 5:30am – half an hour earlier than our scheduled time. There’s a Tim Horton’s coffee shop right beside Admitting so Ray grabbed a coffee, and then we sat in front of Admitting until they opened. We chatted quietly, and then suddenly, we were being met by the greeting committee of one – Georgie:
Now, Georgie is a handsome boy who lives across the street from the Royal Jubilee Hospital. His frustrated parents have given up on trying to stop him from coming over here – he’s an indoor/outdoor cat and when he’s outdoors, he treks over here to visit, supervise, observe and greet. He’s polite and friendly, but very busy and he doesn’t always have time to spend with you – there’s much to be done for this busy boy. Once the metal security gate around the Admitting Desk is open, he trots in behind there to the offices where he’s greeted and loved up and then gets on with his day. Ray and I were so surprised to see him, especially thinking the Hospital would take issue with it, but Georgie seems to have proven himself to be quite the character, and most people who are greeted by him seem to calm down, feel less stress and anxiety and be more talkative, instead of pulling into their shells because of fear. So…it’s a good relationship for everyone!
Alright…so after getting all the paperwork done, confirming I had in fact paid for my new hip, and receiving my hospital bracelet, Ray and I headed to the 3rd Floor to Day Surgery, where all surgical patients start out. It’s only after your surgery that you’re separated after recovery – either back to Day Surgery if you’re going home that day, or to your Floor if you’re staying as an In-Patient. As one of the first people booked for surgery that morning, it was fairly quiet when we got to 3rd and the nurses were just opening the doors. I was directed to a change room with a bag for my clothes and given in return two gowns (one to wear open at the back, one to use as a housecoat) a pair of booties and a hat. Ray took my stuff and then it was time to say goodbye. He had to leave for a meeting involving a volunteer program he was involved in at the hospital regarding prostate examinations, and I would be going through the lengthy check-in process with my nurse Amanda. We had a quick hug and kiss, he took my glasses as well as my clothes (I WISH there was a way to keep the glasses!!!) and away we both went.
Amanda got me tucked into bed, brought me one of those wonderful warm blankets and then we went through my health history. I asked her who would be starting the IV and she said probably her, so I told her about my crappy veins. I suggested we might want to put some heat on my arm now to try and plump them up and she agreed, so we got that started, then continued with the questions. We talked about previous surgeries, outcomes, all my various health conditions, medications, all the various tests I’ve had done, my Diabetes and blood testing, plus my Insulin usage…you name it, we discussed it. Then she went and grabbed the IV kit and we got going on that. I’ll give her tons of credit…she listened to me when I described my veins and what they would probably do – how they would act and react and what she could and couldn’t do if she didn’t get a stick the first time. And because she listened to me, she got that big bore needle in my arm the very first time, with only a small amount of having to probe around for the vein. She said after, she’s learned to listen to people because we know our bodies. We know what will happen and we’re right, so as a nurse, why should she pretend to know more than us? She was an excellent nurse…just the right amount of professionalism and personality!!
Once all this was done, there was nothing to do except rest, until it was time to be moved over to the Pre-op area. Dr. Burnett came in to say hi, and to initial the hip, making sure it was the correct side that we were operating on, and then before I knew it, I was being moved over to the Pre-Op Holding Area. I met with the Anesthesiologist there, who confirmed my choice of Spinal Anesthesia along with IV Sedation, and he explained to me how that would work. Once I was in the operating room and on the table, he would give me a sedative through the IV and then a needle would be placed directly into the cerebrospinal fluid that surrounds the spinal cord, numbing me completely from the bottom of my ribs down. I wouldn’t even know it was done. We chatted about a couple of other things and then he told me they would be ready for me in about 10 minutes. And sure enough…in about 10 minutes, they came to move me into the Operating room. I was introduced to everyone there, they slid me from my bed to the table and started doing lots of things around me. I asked if I could say a quick prayer as they kept busy and then just prayed for God to be with everyone in the room, guiding them to do their best work and preventing any problems from coming up. I also asked the Lord to be with all of the medical people and all the other patients having surgery that day as well, as it was a very busy surgical day. Once I was done, the Anesthesiologist let me know he was going to give me the sedative. I thanked everyone and told them how much I appreciated their hard work, and then off to sleep I went…
Moving on to Part 2 – Post-Op
There is always hope…
Hello. I’ve been missing in action for the last several weeks due to a deep depression that hit and saw me in bed exhausted and unable to function much beyond the basics. I think it was probably a severe Bi-Polar Disorder low; I was diagnosed with this about 9 months ago after living with it for a number of years. I’ve been on Seroquel since the diagnosis with good results but still have episodes that pop up just out of the blue.
I was worried about this because I also had a flare up of my Trigeminal Neuralgia, and I was scheduled to fly to Calgary on November 18th to visit my dear sister/friend Charlotte to celebrate her birthday on the 19th. Somehow, everything came together, I felt well enough to go, managed the flight okay (with the help of friendly Westjet agents and Flight Attendants and fellow passengers when it came to my carry on bag), and once I landed in Calgary and got my first hug from Charlotte, all was right in the world again! Spent a full week with her and her (my) family, had dinner with my son Troy and in general, just enjoyed a great week “at home” at my second home. Charlotte’s son Sam is 12 now, almost taller than me and continues to amaze me with his accomplishments. Sam is a multiple amputee from birth, missing both hands and one foot. I’ll share a post about him soon because he deserves one all about him, but for now, here he is in his cadet outfit. Sam is the very first multiple amputee cadet in all of Canada!!! We’re all SO proud of him!!!!
After returning home, I ended up sleeping for 3 days, only getting up for pee breaks and an occasional bite of food (Ray makes me milkshakes with Carnation Instant Breakfast in them). I finally started feeling alive again by day 4, in time to realize how incredibly sore and achy my hips are. Which led to the re-writing of the classic Christmas song “I Want A Hippopotamus For Christmas” to my version, called “I Want A Hip Repla-cement For Christmas”. Feel free to sing along!
I Want A Hip Replacement For Christmas
I want a hip repla-cement for Christmas
Only a brand new hip for me will do
Don’t want jewels
No outdoor gardening tools
I want a hip to take for walks
Without pain, that’d be new
I want a hip repla-cement for Christmas
I don’t think Santa Claus will mind, do you
Then he and I can twirl
And I’ll be a giddy girl
So get me to the Doctor
That’s the smartest thing to do
I can see me now on Christmas morning
Creeping down the stairs of wood
I won’t need to use my walker
And I can throw away my crutches
When my hip does what it should!!
I want a hip repla-cement for Christmas
Only a total brand new hip will do
No more aches and pain
To drive this gal insane
I’ll only love a brand new hip
And a brand new hip will love me too!!!!!!!
Thank you, thank you very much
Check back later for touring dates when I take this show on the road!!
and like I always say….there is always hope!
We are all moved into our new home!!!!! Oh, what a big job it was, but I’m so happy to be here in the last house we are ever going to live in! Well, let’s put it this way. If we ever move again, we’re hiring people to do the packing and unpacking for us. Ray had to do most of the work (as usual) as well as all the cleaning at the old place, but I definitely did my part as well, and (as usual) I overdid things. I packed up the whole kitchen and unpacked the craft room and most of the master bedroom. Then I slept for days on end, trying to get caught up.
I also ended up seeing Dr. Leong on Tuesday, Oct. 24th to get refills on some of my meds, and made the HUGE mistake of telling him how I felt we’d found the right combination for my TN, as I’d had no flare-ups for awhile. Cue major flare-up that night that lasted for the rest of the week. FUCK! I should know by now to never, ever say stuff like that out loud because it only backfires. So, part of the sleeping has been to try and get away from the pain at the same time.
Exhaustion is a curious beast. I wrote about it on Facebook about 4 years ago, and it came back as a memory just a few days ago at a rather appropriate time. I’m going to share the post here because I’m still too tired and too lazy to come up with a completely new blog post. I think it’s relevant though and good reading, as it shares good information about the differences between people with Fibromyalgia and “normal” people and being tired or fatigued. Let me know your thoughts in the comments.
I’ve had a number of people ask me about my Fibro and constant fatigue and how it affects me. Here’s a long, but pretty accurate depiction of my life. I’m not sharing this with you for sympathy, but for educational purposes more than anything. I love and appreciate my family and friends (especially the friends who have become my family). For those who don’t know me as well, or who haven’t kept up to date with my life, here you go (warning, it’s long!):
How Does FMS (Fibromyalgia Syndrome)/MPS (Myofascial Pain Syndrome) Make Me Feel? (adapted and modified from the fibrowelcomepackage.com)
My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.
My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors, clothing tags, etc. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to a loud and repetitious noise. I really can’t stand it.
My intolerance – I have no tolerance for temperatures. I may sweat…profusely. It’s embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. Sometimes, when I’m lucky, I feel cold and hot at the same time. My internal thermostat is broken, and nobody knows how to fix it.
My depression – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it… Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My stress – My body does not handle stress well. If I have to give up my job, work part-time, or handle my responsibilities at home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.
My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My uniqueness – Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
The difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact, I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things.
Being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases, you’re either paralyzed, or you can move. With this one, it gets more confusing.
Repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what FMS/MPS does to you. – Please understand that FMS/MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
“Getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously, FMS/MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, FMS/MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
If I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/MPS does not forgive. – If you want to suggest a cure for me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first, I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.
My Family and Friends: In many ways, I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too. You’re my link to the outside world… if you don’t come to visit me then I might not get to see you. … and, as much as it’s possible, I need you to accept me as I am, just as I have. I covet your prayers and good wishes but more than anything, I crave normality. I just want to be “normal” and enjoy life the way everyone else does. I realize it’s not possible, but please don’t give up on me. I’m still Pam/Pammi/Pammers/Pamela/Pammicakes/PJ (and any others I might have missed!)
remember…there is always hope!