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I love Mondays.

Tuesdays and Fridays? Meh – not so much. I have gotten used to having only mild ‘as advertised’ adverse events with my little pittance dose of 50 mg of Ampligen. Not a fun “Yay, let’s get infused today!” attitude, but a manageable day nonetheless. This manageability is especially true in light of the benefits I am receiving on a daily basis from Ampligen.

 However, I have now decided that there must be some sort of ‘Factor X’ which ultimately dictates just what kind of an infusion day I’ll have. For example, yesterday was the day from H-E-Double-Hockey-Sticks. It didn’t start out that way. I was fine before I infused. By the time I got out of the building I was feeling rather strange.

Thereafter followed an intense reminder of the horrible nightmare that I lived in for the first four and a half months of treatment. I went into a  full crash. Since I am still not achieving a high level of functionality today I am going to copy and paste selections from previous entries. Tuesday and Wednesday have consisted of:

Sore throat, fatigue, sleepiness, tender lymph nodes, chills, dry mouth, restlessness, dizziness, nerve burning, arrhythmias, nerve pain, nerve twitching, muscle twitching, insomnia, bronchospasm, unusual or vivid dreams, tachycardia, bradycardia, hair loss, increased appetite, changes in food intolerance, muscle weakness, mild flushing reaction, muscle aches, confusion, stiff neck, joint pain, back pain, bone pain, flu-like symptoms, itchyness, depression, hypotension, rash, anhedonia, mouth sores, transient visual disturbances, ringing ears, fluid retention, tightness of the chest.

(Note: This section above contains selections from Ampligen Side Effects which can be read here:
https://theglassmountain.wordpress.com/2011/08/13/ampligen-side-effects/ )

Doesn’t that sound like fun? No? Well, I don’t think it does either. This brings me full circle to why I love Mondays.

On Mondays I am the farthest away from Ampligen as I can get. I revel in the activities and chores and general business of the day. A typical Monday for me now consists of aerobic exercise for 20-30 minutes. I visit three or four stores. I do two or three loads of laundry. I scrub down a bathroom or two (hip hip hooray for sparkly toilets!). Sometimes I even whip out the vacuum. I go out to lunch with friends and shop at the mall. In the evenings I come home and instead of dying from exhaustion I whip up a three course dinner because everything tastes better on Mondays. I settle into bed and sleep deeply and well.

Then Tuesday rolls around and I rely on my Monday memories to take me through another week. Occasionally I get lucky and have a string of almost Mondays. Other times I end up feeling just barely on this side of death. I guess I might be one of those people who has side effects for the entirety of their infusions.  

Either way I love my Mondays.

Sophie      

 

 

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*Note* This post will take the place of the post regarding week 26.

I can hardly believe that I have been taking Ampligen for six months now. I have been writing and rewriting this post mentally for some time now. The issue I had (still have) was that of formatting. I wish to show the leaps forward that I have made while still making clear that I have a long way to go to achieve my long-term goals.

Before Ampligen:

I spent approximately 10 hours a night trying to sleep.

I spent another two or sometimes three hours napping in the daytime.

Except for Sundays, when I attempted to attend church, I spent the rest of my time on the sofa. I googled. I watched YouTube. I watched endless hours of tv.

Once a month I saw a doctor and usually had to lie down during the visit.

Occasionally I would ride along in the car to an exotic destination – like the Wal-Mart parking lot. Once in a blue moon I would venture inside, but only if the shopping list was short. I hadn’t driven in about two years.

I avoided showering often since the heat and steam was sure to make me woozy at the very least.

I never cooked.

I never cleaned.

I could pet my dogs and sometimes throw a ball for them, but those times were few and far between.

I always declined invitations to leave the house for even the most important family functions.  

 After six months on Ampligen:

I spend eight hours a night in bed. Most nights (about 90%) those eight hours are spent very deeply asleep and dreaming.

On infusion days I’ll nap for an hour in the afternoon, but most days of the week once I am up I am up for the day.

I make it to Church about 70% of the time and I stay through the service.

I am still on the sofa more than the normal population, but I can engage in other activities that are a bit more stimulating to the mind. I read a book or two a week now. I spend about 50% less time on the sofa than I did before Ampligen.

I still see doctors frequently, but I am pleased to say that I can sit up for the visit.

I go out of the house almost every day. I make multiple stops at various stores in a single trip. On some of those trips I am in the driver’s seat.

I can now shower whenever I want to and I am pleased that baths (which I never really enjoyed) are now a thing of the past. Hot water, steam and standing no longer make me faint or even woozy.

I cook a few times a week now. Sometimes I do an entire meal, sometimes I contribute only a dish or two. However, what matters to me is that I am contributing something.

I have discovered the Swiffer. I use it at least twice a week. I also manage to do the dishes about once a week. I am able to do light cleaning in the bathrooms some weeks.

I can walk the dogs 2/3 of a mile several times a week. We also play fetch in the yard every day for at least 30 minutes. 

I went to almost every family activity this past Thanksgiving. 

The side effects of Ampligen (after roughly five months of sheer torture) are now simply “as advertised” (which you can read about here on Hemispherx’s website: http://www.hemispherx.net/content/rnd/drug_candidates.htm).

My entire family is exceptionally energetic. They juggle multiple jobs, post-grad schooling and family responsibilities. They rock-climb, hike, camp and run for fun. They work hard and they play hard. I always set mental limits for myself. I constantly remind myself that no matter how hard I try and how well I get I will never be as energetic as they are. I will always fall short. I will always be behind.

As I was writing this, the thought suddenly struck me. Why do I think this way? If six months ago I had thought “I’ll leave the house, but only four days a week,” would I really have attempted leaving seven days a week? Maybe. Maybe not.

So, if in six months I can go from no life, to worst life possible (since that is really what side effects of Ampligen can do to one), to “look at me!” who is to say that in another six months or one year I couldn’t be keeping up with my family? Maybe I’ll even be leading the way on some of the adventures.

Sophie (minus some mental blocks)

To see where I started back in June click here: https://theglassmountain.wordpress.com/2011/05/21/my-baseline-and-me-part-1/

I think I have finally hit another bench mark of health. For the past three weeks I have actually been able to depend on my body. I am learning to feel the difference between when a little push will set me back and when a little push is all I need to get quite a lot done.

Most weeks I am out of the house nearly every day. And when I do go out I make several stops. I am finally able to compile a list of things that need doing (within reason) and do them all in a single trip out and about. About one-quarter of the time I am able to return from shopping and do household business such as: making dinner or doing some cleaning.

Side effects vary from infusion to infusion. For example if I have done nothing but rest prior to the day of infusion I can expect to feel almost normal (except for some additional pain, nausea and tiredness) post-infusion. If, however, I have had a busy day prior to infusion I can expect to be flattened by every major side effect I have listed in prior posts within two hours of finishing my Ampligen. I really try to mitigate my activity on the days preceding infusion. I don’t always succeed, but at least I try.

I have successfully ‘re-upped’ with Hemispherx and I am moving into my second six month period. (That said my six month anniversary won’t actually occur until December 7th.)

I am still on my dose of 50 mg Ampligen twice weekly. It seems to do the job just fine for me personally.

I am looking forward to the holiday season this year more than I have in a long while. I’ll actually be able to participate in all (or at least most) of the family activities.  Compared to past years of being bedridden, sick and saying “you go on without me” this year is going to be glorious.

I hope your holidays are wonderful.

Sophie

 

Week 21:

The day after I wrote the prior blog I awakened and had no voice. I felt fine. I just couldn’t speak. I went in for my infusion and endured a good deal of teasing about my pathetic attempts to convey messages through gestures. Let’s just say charades has never been a strong suit of mine. The afternoon passed normally, but by the evening I began to feel strange. It took me a few hours to realize I was actually sick. The tiny sinus infection which I had been ignoring for the past couple of weeks turned into a raging monstrosity.  I also managed to pick up a virus which invaded my vocal chords and then shot into my bronchials. I went from cruising along at a perky pace to dead in the water in a few short hours. I was fairly well bedridden all week. I even missed my Friday infusion. I literally couldn’t walk.

What a nasty bug and the sinus infection didn’t help either. I attempted attending church on the 30th and was unable to make it through the entire service. I slept the rest of the afternoon. So much for my second weekend of planned retail therapy. By Halloween I was finally feeling better and I was out of bed. I took my sliver of energy and renewed my driver’s license. It has been at least two years since I was last behind the wheel. We celebrated Halloween in style with a costume party. The dynamic duo of H. and R. stole the talent show spotlight with their Elfie and Galinda costumes punctuated by a spot on performance of ‘Loathing’ from the musical Wicked.

Ampligen Week 22:

This week I have been trying to regain the ground and momentum I gained in week 20. I have made a few shopping trips to the grocery store. I have made it to the library twice. I was able to walk the dogs yesterday. I made it to church today and I stayed through the service.

So, while I am not setting the world on fire, a friend recently reminded me that recovery is not linear, but hopefully has an upward trend. While I would consider my current energy to be in a trough, I can see a definitive upward swing which is and remains very promising.

I am hopeful that this upcoming week will bring me more energy, more adventures and hopefully a repeat performance of ‘Loathing.’

Sophie

–Ampligen Week #20 —

A note on flu-season and Ampligen:

After much discussion with my doctor, I decided that receiving my usual small dose of a flu shot would be beneficial to me. I have had flu shots every year of my life. With my newfound activity levels my chances of exposure are now fairly high. I took a 1/3 dose of the shot – which is standard procedure for me and has been so for about the past five years. I reacted much as I did last year and the year before. Since everything went well I will have a second 1/3 dose sometime in the new-year (also standard procedure for me). The rest of the family got their usual yearly dosing (more to protect me than for their own immunity). So far, half of them have had a fairly strong reaction to the shot and half have had almost no reaction. So it remains to be seen (in our family) whether this year will be a violent flu year or not. You should always check with your physician to determine what vaccinations are right for you and your family.  

 This week has been very busy. I am crossing my fingers that busy is my new normal. After Tuesday’s infusion I decided to take it easy. I made a batch of cookies because apparently, though I do not consider baking to be a personal strength, my family really has missed my cookies.

 Wednesday I took the dogs for a moderately brisk 20 minute walk and then got 1/3 of a dose of a flu shot. Thought my arm was a bit stiff I still managed a rousing game of fetch for 20 minutes after dinner. Thursday I did two loads of laundry and a bit of fall cleaning projects. Even after my shot and two loads of laundry I still managed a short walk (15 minutes) with the dogs and had company over.  

  My doctor suggested that I skip Friday’s infusion since I would be assaulting my body with a flu shot. I awakened Friday morning with a fixed determination to sort out my closet. Not an easy task – especially since this particular chore has been put off for several years. I should explain that my entire wardrobe consists of pajamas, old jeans, sweats and t-shirts. Or should I say consisted of. Yes, after cleaning out my closet I actually went for some retail therapy for the first time in three or four years. My goodness, how styles have changed since last I set foot in a mall! I hit three stores in two malls. After all this I still had energy to walk the dogs for 20 minutes and stop off at the grocery store. Then I came home and made dinner. Saturday was almost a carbon copy of Friday except it was shoes I chased after. I left my heart in the mall inside a box with a pair of ivory stilettos. After a decade of house slippers and flats I have not got the muscle (or balance!) to step out in five inch heels yet.

 Lest I ruin my streak of energy I took quite a lot of time to rest on Sunday. I walked the dogs for 25 minutes, but nothing other than that besides a long nap and a peaceful Sunday.

 So far, today has consisted of a trip to the library and walking the dogs. However, there were a few things that I left at the mall which I just might have to go back for.

 All in all it has been a fun week. I don’t remember the last time I went out just for the fun of it. Maybe, just maybe I have really turned the corner.

 Wishing you all the same –

 

Sophie

I am amazed that it has been over four months since my first infusion. Time seems to have both stopped and raced forward. Newton said, “Absolute, true, and mathematical time, of itself, and from its own nature, flows equably, without relation to anything external.” Obviously, Newton never took Ampligen.
 
Over the past two weeks I have been able to manage my side effects better. Some of the side effects seem to be lessening in intensity (except for that blasted nausea). I still have a sore throat, fatigue, sleepiness, anemia, tender lymph nodes, chills, dry mouth, restlessness, dizziness, muscle twitches, migraines, headaches, unusual and or vivid dreams, changes in food intolerances, muscle weakness, muscle aches, joint pain, back pain, flu-like symptoms,  mouth sores, transient visual disturbances and the occasional bout of ringing in the ears.
 
My general current holding pattern is thus: active for a few short hours on Sunday and Monday. Get flattened faster than a sumo wrestler plopped on Jupiter by Ampligen Tuesday and Wednesday. Start to crawl out of the sickness by Thursday. Get flattened by ‘Ampligen gravity’ (again) on Friday and Saturday. Rinse and repeat.  I have been able to do a few more small things around the house on “sick” days. I managed a bit of cooking. I did a load of laundry. I made it through 1/2 of a church service.
 
I suppose only hindsight will prove whether the next two months will be described as tempus fugit or tempus retrocedit. In the meantime, I have some apple trees to sit under.  
  
 
 Sophie
 
 

Many years ago a young woman accompanied a small wagon train as it travelled north. The travellers were about 40 miles from their destination when an early winter blizzard unleashed its full fury on the travellers.  What started as a clear pathway with well-worn wagon wheel grooves swiftly changed into snow drifts over four feet high.  The young woman kept pushing forward through the ever-increasing drifts. As she moved forward to her horror she realized that she could no longer hear the sound of the horses and mules straining in their harnesses above the wind. Unable to see or hear her fellow travellers she continued moving forward in the hopes that by moving forward she would not fall prey to hypothermia. She soon became exhausted by the effort of swimming through snow. Alone, freezing and afraid she paused and uttered a heartfelt prayer for deliverance.

Suddenly a man on a large horse appeared and scooped her up into the saddle. He gave the horse his head and the three carefully made their way to the wagons which had circled to wait out the storm. The man delivered the woman to the travellers and then disappeared back into the blizzard.

I have been fortunate enough in my lifetime to witness a blizzard in the exact location where this young woman became lost. The snow swirled and stung my face. Ice formed on my woolen gloves. I wore polar-fleece and a snow-suit and I was still cold. It is hard to imagine surviving in an ankle-length dress and thin leather shoes. Yet, she did.

What I find most impressive about this story is its parallel to modern life. How often I have started on a path that was well-worn and relatively clear only to find that just a short distance from my destination a seemingly impenetrable obstruction blocks my path, hides the trail and stops my progress. I am tempted to lie down in my proverbial snow drift and let hypothermia of the soul freeze my progress. 

While several times in the past week I have felt the urge to drop off the Ampligen I have persisted in the hopes that by moving forward I will end up where I need to be. I was rewarded with a token day of energy yesterday. I was able to walk the dogs for 15 minutes and shop (albeit briefly) in three stores. I am not dead today nor am I in increased pain. I have stayed at the 50 mg level infused over one hour this past week. I am still optimistic, but I am also learning to be a little more celebratory over the small victories. Making my lunch, visiting with a friend and being able to walk a little more may not be the same thing as running a marathon, but for now I’ll take what I can get. Now, if only the nausea would lighten up…

Sophie

Nobody likes to read a story or see a film where there is no adventure, no intrigue and where nothing really ever happens. The trouble is that when it comes to our own adventures and intrigues the temptation is to want them to be tame and convenient. We are human, therefore we yearn for the proverbial ‘happily ever after’ right after the ‘once upon a time.’ It seems to be all too easy to forget that life, as in stories, has a middle section. This middle bit, while interesting to a reader, is usually very unpleasant for the character going through it. So it is with our own personal stories. The “middle bit” is usually very unpleasant. 

This past week was a series of those “middle bit” days. If I were a character in a novel it would have been an interesting read. Living through it was just plain horrid. I have been more sick for the past week than I have ever been. In 21+ years of being sick, I have never been as violently ill as I was the past week. What I don’t know is why. (My best guess is that the stress of the prior week in addition to the cumulative effect of Ampligen over the past 3 months produced a perfect storm.) All my lymph nodes went crazier on Monday night than ever before. From my head to my knees lumps of varying sizes popped up. The most frightening thing that happened though is that my tonsils and lymph nodes of my head and neck swelled up so much that I felt like I was trying to suck air into my lungs through a straw. My fever shot up to 102 and hovered there day after day. The pain would have been unbearable had I not been terrified of dying from lack of oxygen.

I skipped the Tuesday infusion and had my dose reduced to 50 mg on Friday. I upped the infusion time to one hour. So far, I have been less sick. My family honestly thought I was going to die this past week. The family has now set up a schedule whereby I am never alone. They have also instituted an emergency plan of what to do in case my airway disappears again. Having medical professionals in the family can certainly be a boon to survival. 

Despite all these things that have happened to me I still believe in Ampligen. I want it to be approved and available. Getting my body to cooperate with Ampligen is the real twist in this story.    

While I am less sure of how everything is going to work out, I am more sure that everything will work out just as it is supposed to. In the meantime, I am counting my blessings and focusing on the last sentence in the last chapter of my personal story book – “and she lived happily ever after.”    

Sophie

Sometimes you have the feeling that because you are doing something that is incredibly hard, stressful and more important than anything you have yet attempted in life, that somehow in someway life will allow you to focus simply on your target. That feeling is usually a false flag.

Like a pirate ship sailing under a banner of peace – life sails up beside you and overwhelms your defenses. If you survive the attack you are left to wonder why the heck you didn’t see the approach. 

That was what the last week has been like for me. The combination of physical and emotional stress of the past week overwhelmed the benefits I had been steadily gaining. I have been knocked right back into feeling like I am in my first week of Ampligen. To be honest, even if I was a healthy, well person I would probably be feeling like this. I hope I never have to live through another week like this one ever, ever again.

I managed to pick up a few new side effects as well. It is possible that my body just couldn’t cope with the stress. I may actually be sick, but who knows? When you feel this crappy it is difficult to differentiate between causes and effects.

I seem to have developed a rather bad case of pleurisy. Between trying to breathe as lightly as possible and struggling to find a comfortable position for my ribcage I could just scream. I can’t take my pain medications or my Claritin. The pain medications (except for Tylenol) depress my breathing further. The Claritin dries my mucosal secretions out (I know… TMI) making it harder to breathe too. Hypoxic-Blue is just not my color.

Between the pain, the usual infusion symptoms, the new breathing problems and the events of the week I feel on the verge of total physical, emotional and mental collapse.

Fortunately I don’t wave white flags.  

Sophie

 

Twelve weeks down…many, many more to go.  To compare where I was three months ago to what I am up to now click here: https://theglassmountain.wordpress.com/2011/05/22/my-baseline-and-me-part-2/

Sophie’s Typical Week: 08/28/11

Sunday:

I am up by 7:30 am. I still only make it to church about 50% of the time.  (This is mainly due to the fact that I cannot bear going to church looking like a slob. Since I will only go to church showered, hair done and looking pink and primped, it may be a while before the percentage of Sunday church attendance rises.)  I return home and take a one hour rest. I will do a couple hours of computer work (emails, blog etc.) and then help with either dinner or dessert preparation about 70% of the time. I take the dogs out for a 30-50 minute play session (fetch, obedience, agility etc.). I will watch some tv and then work on an art project or sometimes speak to a friend until about 10:00 pm. Then it is off to bed.

Monday:

I wake up around 7:30 am and watch the news, do a bit of reading and then a few minutes of exercise. The exercise is usually 5-7 minutes of walking at about two miles / hour. I usually manage to repeat this exercise twice more in the day. I try to get an hour or so of work in on the computer before lunch. I have managed to make myself lunch about once per week. After lunch I take a one hour rest. Following that I go out into the world. I make one or two stops totalling about one and a half hours. I come home do some more things around the house (very basic things, like dusting a room or brushing a dog). After that it is dinner, tv and bed.

Tuesday:

I  am up at 7:30 am and I usually try to work in a brief walk before leaving for my infusion. With my infusion time and drive time I usually do not arrive back home until mid-afternoon by which time I am more than ready for a nap. Out of the past three weeks, 50% of the time I have made a stop at a store on my way home from and infusion. I am usually wiped out for the rest of Tuesday. I get to bed by 10:30 pm and sleep fairly well (excepting the nightmares, of course.)

Wednesday:

Wednesday mornings are a total wash-out. By Wednesday afternoon I am usually able to check email from the couch (as opposed to the bed) and by Wednesday evening I am usually just a touch below my new baseline.

Thursday:

Is much like Monday, except about 70% of the time I end up with energy to do something additional such as baking a batch of cookies or perhaps something more ambitious like making soup. I have been able to have a few friends over and because of the infusion schedule I usually receive company on Thursdays. While I am quite tired after visiting, I am able to do it even though I have already been out of the house earlier in the day.  

Friday:

A copy of Tuesday.

Saturday:

Is a copy of Thursday (minus the company).

 

To the casual observer my week may appear very similar to what I was experiencing three months ago, but I can feel a difference and see a difference. Having been virtually housebound for the past several months and suddenly being able to go out two to three times a week seems miraculous to me. Going out is the biggest change, but what has made the most difference so far is the little things. Just staying alive seems easier. (Except for infusion related living – that is an entirely different story.)  

I no longer just sit on the couch and watch endless hours of television. I can now sit in a regular chair for a couple of hours at a time. I have been able to consistently play with my dogs. I can now walk through a store for 40 minutes without thinking “I’m gonna die!” I can read again (and more importantly understand what I have read and remember it.) I am able to write this blog more easily. There seem to be a hundred little things that are just easier to accomplish. I am not blazing through life, but at least I can literally stand up and you have to be able stand before you can run.

Sophie

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