Being sick when you are Chronically ill.

image by Fukari on

People who are chronically ill have to deal with symptoms every day…some days are better, some are worse…but what about when you get sick from something else.

Even a cold can knock me for a loop.  There have been many times this year that I’ve felt I’ve had a cold, but it’s only lasted a couple of days.  What was that?  At least it didn’t last long.  I keep thinking it’s probably allergies.  Now, I feel like I have a cold…Day 3…perhaps I really do.  But ragweed is really blooming here and it’s EVERYWHERE!  So maybe??

It doesn’t matter, it’s causing the same symptoms: scratchy throat, more mucus, stuffy ears, a bit of a headache, (but much less than usual when I’m sick).  Being sick, when you are already sick can cause all sorts of trouble.  My ears are stuffy…not a good thing.  I walked in the bathroom night before last and just before I got to the toilet the world moved and my world started to go dark.  This is the closest I’ve ever come to taking a complete nose dive straight on the bathroom floor.  I held onto the sink for dear life, and started squatting down…thinking if I fall it won’t be as far to fall.  I called Stuart and he saved me.  It didn’t last long, and I felt a bit guilty for waking Stuart up, but if he hadn’t come I would have been on the floor soon and preventing that is much better than trying to get me up after I fall.  He was a dear and stayed right with me.

I’m not sleeping well because of this cold thing…and that’s not good for most chronic illnesses, mine is no exception.

I can say my head has been feeling much better.  The day before I started feeling sick, the day was overcast and just yucky.  The type of day that normally sends me to bed with a category 8 migraine.  I actually went out that day!  I did not have a migraine!  Unbelievable.  So maybe the Botox is working..(crossing fingers and toes).  What ever is causing me to have less headaches I’m happy.  This week has been nice….as far as the head pain goes.  : )

All of this brings me to another question.  Sometimes when I have symptoms of getting sick, it mimics symptoms that I get from my chronic illnesses.  If you have this problem, how do you tell the difference?

For example, I have a lot of gastrointestinal issues because of the gluten and fructose intolerance.  When I have any tummy issues, running to the bathroom sick, I automatically think I must have eaten something I shouldn’t have.  or was hit with cross contamination.  But, what if it’s really a stomach bug, or worse…food poisoning?  I keep thinking it’s my fault, I ate something I shouldn’t have, when I possibly should be heading to the doctor.

Or with my ears.  I get off balance, feel like my ears are full…all symptoms of Meniere’s that I have often…but what if I’m getting an ear infection?  This has happened numerous times.  I end up getting a very bad ear infection because I think the first signs are just my normal stuff.

I don’t really expect any answers.  I try my best to be as in tuned with my body as I can, to notice if something isn’t exactly like the usual symptoms, but it’s hard.  The thought of going to the doctor and being told it’s nothing just makes me cringe.  (but we’ve all had that haven’t we) I think all we can do is try hard to keep ourselves as healthy as we can in spite of our chronic illnesses, and really pay attention when you start to have more symptoms than normal.  (doesn’t that sound strange, that we have symptoms that are just every day normal things.)

A little update on other things.

I was supposed to get my hair cut today, but it has been postponed until next Friday.  Not that I don’t like my long hair, but it’s thinning, and the doctors haven’t been able to figure out why yet.  She put me on Biotin to hopefully help some, and I may have to see a dermatologist…but that will have to wait.  In the mean time, I’m getting my hair cut to make the thinning less obvious.  (right now I have to wear my hair in a pony tail, or tied back so it’s not visible.I’m not saying I have a huge bald spot or anything, It looks like I have a wide part trying to go down the back of my head, and I can’t cover it.)  So next week, I should have photos of before and after!  I plan to get about 10 inches cut off.  I’m donating it to Pantene Beautiful Lengths.

The progress with the CI (cochlear implant) is going well.  I’m hearing more, but things still sound a bit tinny.  I hear best with the CI and my hearing aid at the same time.  I’ll see the audiologist and Dr. K. again before I leave for Tucson.

We leave for Tucson, AZ on the 27th.  I can’t believe it’s almost here.  It’s been months away for so long, now it’s just around the corner!  So much to do…actually, my darling husband has done almost everything.  He’s a wonder!

One more note about the Botox….as Allison said on her blog about her experience, I’m having less expressions with my eyebrows.  I had an appointment with my therapist the other day and she actually noticed my expressions were not quite right.  I guess that’s why she gets paid the big bucks (haha) she needs to notice things like that.  It was strange to say, oh it’s just the Botox.  (she already knew about the treatment).

I’ve had another couple of breakdowns abut Sandy…I think it has actually helped some.  To get it out and not hide it, to let people know how very much I’m still grieving.  The last time I broke down (I really breakdown, can’t talk, sobbing, shaking all over….ect)  Stuart said the wrong thing.  He didn’t mean it and thought it was helpful but…he said, “This isn’t helping”.   No shit!  Well, him saying that actually did help, I got so mad it him it snapped me out of it.  He really felt bad…just awful really.  I couldn’t stay mad long, but it was a learning experience for both of us.
Sandy is still with me.  She always will be.  As someone told me, I have a Sandy shaped hole in my heart and nothing will be able to completely fill that shape.  I do hope I’m through with the complete breakdowns.  No fun, and Stuart is right, it doesn’t help.  It actually hurts me physically, then I’m hurting everywhere.  My therapist suggested some art about Sandy.  I had started some, but haven’t finished it….I have a lot of things I’ve started but haven’t finished  (I’ll take photos some time, and you can see the great unfinished works of W. H.)

I’m sure I’m leaving something out….but there is always next time.  : )


5 thoughts on “Being sick when you are Chronically ill.

  1. Living with chronic pain all over my body so that I always feel like I have flu aches or worse and dealing with IBS/diarrhea–all that plus some other issues normally–well, it is really hard to tell if I actually have the flu. I can only tell by taking my temperature–LOL! Right now I have had a lot of the symptoms you described since Monday–and I don’t know if it is allergies or a cold or what. Doesn’t matter, really, as far as those two go. But I’ve always said, if I had something seriously wrong with me I wouldn’t know it until it was really bad. I had an impacted molar for so long it had a cyst that was eating away my jaw and I didn’t know it till the side of my face swelled up. It just blended in with the rest of the pain and my lower back hurt worse than the molar. I can empathize with some of what you live with. No answers here. 😉 Hang in there. This too shall pass.


  2. Oh my, you certainly don’t need to get a cold or allergy on top of everything else. There isn’t really anyway to tell where one illness begins and the other ends. And it can drive you crazy trying to figure it out.
    You are a marvel and are too sick to even realize it!
    (can’t send you kisses because you might be contagious!)


  3. I wish I had some great words of wisdom but I think you’re right when you say to stay in tune with your body. Some days I feel so wiped out and woozy. Then I remember to check the weather station and find it’s a change in weather. This works really well in non-cold times of the year. During cold and flu season, a weather change makes it feel like I’m getting the flu. I’ll take some Tylenol just to be on the safe side and drink more water and usually feel better the next day. If it is a virus, I’ve already started with the extra water and pills.

    During cold season, I do my best to make sure that I have the cold medicine that I use. If I think or I know it’s allergies, I’ll up the dose of the allergy pill (extra strength reactine to prescription strength of 20 mg) and use my nasal spray again in the afternoon. This past spring I started using a nasal rinse and that helped.

    I know I’m now more susceptible to colds. It seems that I have a neon glow so that the virus can find me. Last year I started taking a vitamin d pill each day, starting in late August until the following spring. As you know, we’re bad for passing colds to one another here in the house. I found while I still got a couple of colds, I felt sick but not as bad as previous years. The problem is that the mid-winter colds now seem to last a few weeks for a lot of people. Those viruses are always evolving.


  4. Since the “great stress” of 2004-05, I’ve had regular episodes of thining hair. I’m like Pig Pen from Peanuts; I’m surrounded by a cloud of hair and leave a trail behind me (like bread crumbs in the fairy tales). And, I was a shedder before the “great 1st shed.”
    I wear my hair back with a clip for that reason, but every time I sweep the floors, I still find hairball dustbunnies (yuk!) and touching my hair means strands stuck to fingers and amassing in embarassing places like grocery stores, waiting rooms, etc.
    Keeping your hair shorter also makes the amount of hair in your brush or on the floor seem less; short strands aren’t as dramatic as long ones!
    Donating your hair is a great idea — it can make such a difference in the life of a kid undergoing chemo, for example, to have “hair” to wear. Not every class/school shaves their heads to match the child who has lost theirs.
    I always attributed the loss/thinning hair to meds; my doctor argued for stress. I suspect it’s somewhere in between. Some meds do list it as a side effect.
    I also regularly feel like I’m coming down with a cold/flu/virus: achier and more tired than usual; sorer throat; post-nasal drip stops or changes; ear lobe and usually right arm pit hurt, ears and nose more plugged up; a low grade fever, etc. Usually the symptoms disappear and the expected infection doesn’t go any futher. My allergies are different than these psuedo-viruses (virusi?); my episodes mimic my version of a sinus infection more than a cold. Folks with chronic illnesses seem to have these “almost colds” more than non-ill people. Again, meds, stress and compromised immune systems feed into the pattern. Now, is it starve or feed a cold?
    Hope you’re feeling better soon with a new do! (wow, I did go on, didn’t I!)


  5. Katie

    You sound positive (even about the negative stuff) Wendy! I like it : )

    I honestly am relieved sometimes when I get ‘normal person sick’. It’s kind of nice to feel like I just have a regular old cold, something that everyone can relate to and understand. As much as people try, it is difficult to understand what we go through when we are experiencing an MD attack. I do find that having a stuffy nose really messes with me though – blowing my nose frequently (or sniffling!) can totally throw my ears off, which is expected.



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