Ups and Downs

Printer-friendly version

Author: 

Taxonomy upgrade extras: 


UPS AND DOWNS
Isn't that a Racetrack in the UK?

After Bobbie's disturbing news yesterday along with Beth's request for prayer for her brother, I was reluctant to write this, since my problems are paltry compared to what they described, but what better way to gain support and encouragement than to talk to my other family here. My tremors have significantly diminished, and the broad shaking and neck and head spasms have ceased entirely, both of which my neurologist had expected. The tremors have likely plateaued, which means that while things have improved immensely, they've 'settled in' to where they'll be from hereon in; shaking will continue to be an issue with fine motor skills, and they do increase with stress, which is a component of the condition. The other shaking has nearly disappeared, owing to the discovery and continued work in healing from memories and flashbacks. The likelihood is that most if not all of the 'revelation' that was going to be discovered has happened, and any flashback is an invasive but duplicate memory or sensation; they still hurt or become repulsive, but their impact is diminishing over time.

The frustration arises with the dizziness and loss of balance and occasional fall. I was at a wine supermarket yesterday getting some Merlot for my wife. My son even noticed that when I stood up after inspecting the bottom shelf, I reeled a bit, which caught the attention of several people. I was concerned that they might refuse service because from a distance, they may have thought I was intoxicated. But after righting myself, the dizziness decreased and my gait and posture returned to normal.

When I got home, I did some more research on the internet. I may be suffering from orthostatic intolerance, which simply means it's difficult for me to stand up without getting dizzy. In some extremes, it can make it difficult just to remain standing, but in most cases it goes away quickly like I experienced yesterday. OI is a sometime sometimes symptom/component of Chronic Fatigue, and in some cases is inclusive in Post Orthostatic Tachycardia Syndrome, or POTS. Another thing to get cope with rather than suffer from, so to speak.

The fibromyalgia and chronic fatigue have gotten me very discouraged, since I ache all over all the time; something that has gotten worse with stress. Writing here is a very effective stress reducer, even when the subject may be painful or sad. My therapist is on an extended medical leave of absence after suffering a relapse of her illness, so she's sent me referrals for help elsewhere.

Any of you who are currently or have received help from a therapist know how difficult it is to change, since you have to explain all over again what's going on and establish yet another trusting therapeutic relationship. I'm hoping the transition goes quickly.

My wife continues to struggle in high stress job as a nurse in a psychiatric facility, which exacerbates her own fibro and CF. And I haven't been able to work for a while after being unemployed for nearly six years. It remains a struggle for both of us as we deal almost daily with the effects of our conditions.

Having said all of this, and certainly seeking your continued support and encouragement, I still had a better day than some of you here. Please know that you are in my heart and my prayers always. I have grown so much and become so much more of whom I believe God intended me to be, and much of that growth can be attributed to writing here, which can in turn be attributed to the support, encouragement and comfort to this old girl. I want to thank all of you whom have given me such strength over the last year. I treasure each day as an opportunity to be grateful and for the opportunity to pass on to others the comfort I myself have received.

Much love to all of you. Andrea

Comments

If you want/need...

I can give you contact info for a Psychiatrist here in NJ... The one I use. She's also been through the many of the issues, including losing her job @ Rutgers due to transitioning - just months before the state law went into effect that would have protected her. (Not bitter, either, which is good.) I find I like her a lot.

Let me know if you want her contact info.

Anne

Dizzy on standing

Andrea, when you feel dizzy upon standing up, try to cough. Somewhere in ancient times (i.e. I don't remember exactly when) I came across an article that mentioned that a cough moves around 3 times as much blood to your brain as a normal heart beat. It supposedly works by pressurizing your chest cavity and forcing blood out to your extremities. It can't hurt to give it a try.

In Sickness And In Health

joannebarbarella's picture

As we get older all sorts of things come to plague us. There is no solution to many of these afflictions other than enduring them. All I can offer, 'Drea, is sympathy, and in the odd case, like with the essential tremor, a shared experience and perhaps some knowledge of alternative treatments.

Hang in there, my dear. As a famous Australian comic once said, "It beats being dead by quids",

Joanne

P.S. I've been to Upsand Downs and lost a packet!

Is this a trend?

bobbie-c's picture

Hi!

So you're starting a blog, too? Heehee. We might be starting a trend here. Cool. All I can say is that, you're absolutely right, Aunt Andrea - blogging here a good way to get positive and constructive support, or just simply a nice way to tell your online friends about your day. I can't say how much it has meant these past months has been, writing my little blog, reading the positive comments of the folks here and interacting with them.

Hope to see more of these blogs of yours.

I have to say, this is quite a change from the story "commercials" that most of the posters use the Blog Section for. Nothing wrong with that - I guess it's just one of my own little pet peeves. So don't mind me. (Telling others when a new installment of one's story is coming is, in my opinion, not really a blog, but I'm sure such posts would fit so well somewhere else - perhaps Erin and the others behind the scene can set up a new section dedicated specially to these commercials, or maybe a subsection in the Story Section? Like a "coming soon" section? To clarify - I'm not criticizing nor demanding, just suggesting here. And, like I said, this is just a personal point of view, 'k?)

Anyway, like we talked about before, it's good to do your best to try and learn as much as you can about your condition, but it is a bit dangerous to self-diagnose. It's good that you aren't self-medicating (because that is definitely dangerous), but you might be assuming things about your condition which might not necessarily be right. So it's always good to seek professional advice. Yes, we talked about how difficult it is to get professional help, and I don't have any concrete suggestions how to do that, but maybe, at the very least, tell your doctors about what you're going through, the symptoms, etc, as soon as you do get an appointment. Might also be good to tell them about what you think they could be.

I don't want to butt in. I guess I'm just concerned. But I can, at least give this kind of advice, that I'm sure your doctors would approve of - keep busy with something positive, keep your mind as occupied as you can, and be physically active as is possible. This is from personal experience. Especially now, when I'm going through my own little crisis.

Given your balance problems, being active might not be easy, but I am sure there are ways. Here's another piece of advice that I'm sure everyone will approve of - get a cell phone (there are those really cheap disposable $10 ones, and, though most don't have a way to text, they're more than good enough for voice calls, and you can top off the phone credit when you need to). When, say, you're walking your dog on your own, or buying something at the market, and you find yourself in a difficult spot or something, you can reach for the phone and give someone a call - the family, the hospital, the police, etc.

Anyway, sorry for being such a busybody, but all my advice is very generic and easy, and if you've already thought about these (and you probably have), hope you aren't too irritated.

Keep thinking positive thoughts!

   
bobbysig-blue2.png
To see Bobbie's stories in BCTS, click this link: http://bigclosetr.us/topshelf/book/14775/roberta-j-cabot
To see Bobbie's "Working Girl" blogs, click this link: http://bigclosetr.us/topshelf/book/19261/working-girl-blogs
To see ALL of Bobbie's blogposts, click this link: http://bigclosetr.us/topshelf/blog/bobbie-c

"Seek professional advice"

Yeah. I couldn't agree more. To make it clear, I'm saying that a professional who knows what he/she is talking about is going to be way more help than just figuring stuff out on your own.

Except for two awkward facts. One is that, for ME/CFS/Fibromyalgia* sufferers**, half the time the patient is likely to be better informed than the health professional, and the other is that he/she may have a particular viewpoint about these diseases which may not be helpful to you, the patient.

I have ME/CFS/Fibromyalgia (although that's not the sum total of my afflictions. I also appear to have been issued the wrong body type, amongst other things). My own physician, whose care I currently am under, knew less about these diseases than I did, after working me over for many months trying to find out what was wrong with me.

The good part is that he was willing to work with me, and didn't have a preconceived idea of what these labels represented. The bad part is, because he knows squat, there's very little actual treatment going on. Not that there's actually much he can do, but after three years diagnosis I don't see him that often any more. Ho hum, that's the NHS for you. I know I'm not going to get much better in any case.

The point I'm making is, I suppose, that not all healthcare professionals are the same, and the standard of care you might find can vary widely, for this as for any medical treatment. Be prepared to shop around to find someone who can offer treatment that works - for you.

Penny

* If you research such things on the Internet, you will find a mass of reports and overlapping symptoms which suggest that all three labels indicate variations of the same disease. Doctors are passionate folk and it seems the whole area is subject to the health equivalent of religious wars.

** Other diseases may be available in your jurisdiction!