Losing me!

Hi Chrissy,

Yes, like a lot of other people with this, I completely Empathize with the symptoms you describe. It can be so distressing and difficult to see ourselves as so unable to do the things we want or could do previously.

Its so hard to accept these other parts of cfs/me. Sometimes it makes me miserable too but mostly just frustrated. I've stopped getting annoyed with myself though. Tonight, I told someone I lived in London when I live nowhere near and was nowhere near at the time! I corrected myself and wasn't bothered that it may have seemed foolish. We have to be our own best friend on bad days with this condition. Be gentle with yourself. Rest as much as you feel you can/need to and if you can, surround yourself with things you like.

Hope this helps

B

Hej to Chrissyboo - just a short one as I am in a bad state after a journey, but to say hang in there! A lot of adjustment is needed to live with this illness, but my experience is that even the best one sometimes breaks down and you have a relaps of grief and frustration and fear over it all. They can be violent.

Be nice to yourself, it will likely pass.

 

Hello, just wanted to add my comments as I feel your pain on this one.  I was diagnosed with CFS four years ago, after a zillion blood tests, trips to various specialist etc etc.  As others have said this debilitating illness is barely recognised by doctors and it can become very emotionally draining trying to convince both everyone around you, doctors, family, friends, work colleagues etc that you feel so unwell when there is no evidence.  I've lost count of how many friends ive lost, how many dates ive not turned up for, how many good times ive missed, the holidays ive been on and not enjoyed, the list is endless and makes me feel like ive wasted the best years of my life.

 The only advice I can offer is push and push your doctors, get your thyroid, adrenals, pituatary, hormones checked.  Don't let them fob you off with anti depressants (here in the UK its the doctors answer to everything....prescription (money making) drugs that really don't help (so you return to the doc for more prescriptions....more money making) Anti depressants whilst may help in some cases, the main reason your feeling blue when you have CFS isn't because your depressed it's because your fed up of feeling so ghastly day in day out.  

Once all other processes of elimination have been addressed and your once again left with a blank faced bored looking doctor (standard) then you have to become a doctor of the Internet....a Google Phd and trawl every bit of information you can find and join sites like this for support and guidance.

I strongly believe now after all these years suffering, stress is the biggest factor and can only be resolved by diet change, lifestyle change, including high quality supplements, amino acids, vitamin b12, vitamin D, omega 3...read up as much as you can on these things.  I also believe ridding your body of toxins would be beneficial, mould, yeast, candida, parasites all need to be addressed, quit taking anti biotics (again overly prescribed) if you do have to take anti biotics, then back up with pro biotics.  Try extra virgin coconut oil it's full of probiotic and can really get to work quickly in killing of the bad bacteria.  The Gut and the digestive system if out of whack can really bring a persons health down over time... "You are what you eat"  as the saying goes.

CFS/ME is a horrible illness and no one knows how to get rid of it, it's all a process of elimination. Maybe one day those big get rich quick pharmaceutical industries will come up with a vaccine/drug/intervention make us all better and we will all be free of this debilitating soul destroying sickness...but I somehow doubt that given healthy people aren't good for economy and such! 

I sincerely  hope you feel better soon, enjoy the good days and relish the rest where you have to.  Best wishes to all of you suffering 

 

Krissy ,

I have been there and often get there on the list by the end of the day even on a good day. My RA is the one who diagnosed me with FIBRO after he pulled and tugged on me. No test beyond that . He gave me my meds and explained that my daily intake should be less than 2000 calaories a day. He also asked if I could take a few days off. I laughed at the moment not knowing what the future was going to hold. I see him on a regular basis, but each time he increases my meds , I get worse and he gives a higher dose.I am now trying to get into pain management and having several test done. I firmly believe it is thyroid related. Although my new GP has one of the test for LUPUS , my hubby and I explained this to the RA and he got insulted. He made the comment that 1 in 5000 have Lupus and it was absurd, as my hubby puts it chances are if it could be whycouldn't it be me. All of the medicines that I ever take I am the 1 percent who face the side effects of the medicine.

How I see it we get angry for many reasons , one being the pain that we are trying to keep to ourself or we would start biting , kicking and hitting people for not making us better or knowing the answers. Secondly, I think we get mad at our selves for allowing this to take over how we live. I can't say much more on that as I always thought God and I was in control of mylife. Thirdly this label name , able to have a name with no cause , no cure and it taking over people's lives, families, jobs, memories, ect.

In the terms of multitask , I think I still can but I am not sure if I have had the possibility since I had to withdraw from my last semester of college this semester.

I often stare at the t.v. and don't really watch , but I did that before . I never had time to watch t.v. , I can say that I was finishing a semester of college as this "Fibro" entered my life and I managed.

I often share life memories with my children as I never now when I will be called to heaven , so I share as much as I can.

Yes, I deffinitely need a chaparone especially for doctor's appointments and driving. I don't trust myself on Lyrica , I can't see clearly lately , my heelas feel like I am standing on razors, I have this horrible metal taste since I took the first pill I took and it never left. It makes me sick to take it. I am becoming so weak , I can barely open the front door . I am cramping ,and much more.

I never had a presence of time , I woke up and went until I couldn't go no more and then did it again the next day, now 8 pm is my bedtime most nights .

I walk around like I am 90 at times, I have a walker it helps. I have found accupuncture helps just as much as the meds. I have to have hand and bladder surgery and can't till the pain subsides , really this is going to happen. At this point I am ready to call the news crew when it does because I have felt like I got either thrown by a ride at the fair over and over or I got in a major vehichle accident.

Some days are better than others , and I am thankful for it. I too am becoming deeply depressed, frustrated and annoyed that I am not doing the things that I need to or that I once did. Good Luck ! I am at the point I realize that we all have different symptoms and different treatments will help different ones. I have tried the Guaffessian Protocol , either I didn't do it correctly or it didn't work for me. I am researching the next treatment .