Update And a Full Plate of a CFIDS Gal.

[Misfit Toy]

I have been having an extremely hard time. My mother is not the same, I miss my sister and family and I feel lost yet again. I saw my mom yesterday and I have to talk so loud for her to hear me, plus she doesn't understand so much. I become so frustrated with her and myself. I think to myself, "You clearly could never have a child." I know that my mom is going to die in the next couple of years and it's killing me. She will be it. I keep grieving. All of the time. Between the loss of family members and this illness....

On top of that, I have several things going with CFS right now that are really making my life a living hell. A rash all over my legs that itches like crazy. I believe in the whole mast cell theory with us. I have so many allergies and reactions, it's not funny. So many people ask me, "What can you eat?" Good question. I went to an allergist today and will have tests for "mast cell activation syndrome." The treatment isn't grand or great, but it would explain all of these insane reactions TO EVERYTHING. I want to know more than anything....why? Why could I eat pizza for years and now all 3 things that make up pizza cause me to be so sick? Please don't say leaky gut syndrome. I am so over that diagnosis with crazy treatments including growing your own sauerkraut, which made my place infested with flies. Or Kefir, which I made and it did zip for me.

The allergist I saw is from what I can tell, pretty good. She believes in CFS for one. I have to have several tests for Mast Cell Disorder. I was up all night last night due to eating half a muffin yesterday and my IC went nuts. My rash, too. I remember years ago, with CFS being able to eat everything. Even if it is leaky gut syndrome, there isn't much that can be done about that. I have tried EVERYTHING. All that anyone recommends, done it already. Except for of course the crazy fecal transplant. Not going there yet. Honestly, it may work but it makes me laugh. Beyond gross. My doctor said the last thing that was written up about fecal transplants did not give it the thumbs up. It doesn't work for everyone, by any means.

I had said a few days ago that I was going to try dating again but I realize, I just don't have it in me. I am too tired and if I eat something that doesn't agree with me, I am down 2 days. I can't think and if I can think, all I can think about is how to get out of this hell. I seriously am glad so many have spouses and boyfriends with CFS and at the same time I wonder....how? How do you have the energy? I don't feel lovable with this disease when all I do for the most part is try and decide to get better and all of my energy is going there. My energy would not go to the BF, which was a huge factor with the last guy I was with. He always felt neglected. Every relationship I have been in, the illness comes first. It has to.

And...

I go and see my CFS doc on Wed and the office told me to decide on one reason I am coming in. In other words, choose one thing to discuss. Really? How with this disease? One thing? I have a major rash, I need trigger point injections for Fibro but they are only covered 4 times a year and they only last 2 weeks each time. Also, I want to talk about my 23 & Me testing since I don't understand it.
Choose one thing....sure. With this illness, that is near impossible.

I am so tired and lonely. I told my therapist the other day....all of my good memories are from years ago. When I was better, when more people in my family were alive. All of my Aunts and Uncles are dead, my father, my sister....gone. I want to have people in my life to make good memories with. I want to get better. Why is it so hard to get better? I am not on death's door, I am not housebound, but I feel like I can't get past this threshold that I always remain at. It's neither here, or there. It's an in between state, that I hate. I know many would love to be in this stage that I am in, but when you have been here for 24 years, you want more. I once had more.

I went to pick up Singulair today. Very expensive. All of my treatments are so expensive. Acupuncture, a therapist, meds, supplements, supplemental insurance; I seriously wonder how anyone (the government) really thinks we can make it on just Social Security. And...if you do have to go into subsidized housing; what if you have to wait for 2 years? Where do you go in the meantime? So much about our government just doesn't make sense. The new allergist said to me, "If you don't have a supplemental insurance with Medicare, save up for a coffin with the new ObamaCare." I do have a supplemental insurance, but boy did that freak me out. She said, "As long as you are well and working, you will be okay, but if you are sick and in a bad way, it will get worse for many." I have not even read about ObamaCare. Why? Because I don't want to. I don't know how much more negativity I can take.

Anyway, an update. Too much on one plate to talk about one thing. Don't even know what thread or where to put it. Just an update.

 

[Insomniac]

...I had said a few days ago that I was going to try dating again but I realize, I just don't have it in me. I am too tired and if I eat something that doesn't agree with me, I am down 2 days. I can't think and if I can think, all I can think about is how to get out of this hell. I seriously am glad so many have spouses and boyfriends with CFS and at the same time I wonder....how? How do you have the energy? I don't feel lovable with this disease when all I do for the most part is try and decide to get better and all of my energy is going there. My energy would not go to the BF, which was a huge factor with the last guy I was with. He always felt neglected. Every relationship I have been in, the illness comes first. It has to...

And...

Thanks for the update. I could relate to EVERYTHING you wrote in that quoted paragraph above.

It bothers me that I don't have the energy for a man and don't feel lovable with this exhaustion. I am 36 and I see my looks and youth disappearing so fast but on the other hand, don't know how I'ed cope with a man and this illness together. It's like a dilemma. Also all my memories are in the past too even though both my parents are alive and I am not suffering with like you are with looking after your mother. I got ill at 15 and it got serious at age 19 so all my happy memories have me as a teenager.
I compensate by daydreaming and happy fantasising a lot which is a rather helpful psycological tool.
I avoid therapists or psycologists etc like the plague and enjoy the fact that it saves me money too. I save that money for my physical health e.g supplements, docs.. That is just me and my odd negative experiences with them. Maybe your therapist is really nice and actually helps you.

You also said "why is it so hard to get better" - that is another thing I could relate to.
I got 6 months of significant relief from food allergies/intolerances (not nasal allergies or tiredness) from raw camel milk but then it stopped.
If you ever get enough money for it, I recommend you try it. Start on a few tablespoons and build up slowly to 1 cup in the eve and 1 cup in the morn on empty stomach. It took over 3 weeks to see a result for me. It stopped working after 6 months. I stupidly tried a Theonine and magnesium supplement recommended by this forum and that messed up my gut so much that the camel milk stopped working, though I suspect it would have stopped working anyway.
The camel milk might help you more than me. I get the impression that your gut health is less messed up than mine because you could actually tolerate kefir without pain, (even while it did not help.) I got stomach pain on kefir. Just thought I'ed write about it. I like hearing updates from you.
-Rachel

 

[Misfit Toy]

redrachel76, Yes. That's it. I am getting older and looks fade. I feel that at one point, my desirability will be gone. I am getting older and I can hear the clock ticking. I want to share my life with someone. My misery. No, I have good days, but the bad would scare most men away. It affects me mentally, this illness. Yesterday I was a crying mess. All because of eating a muffin. The muffin caused such a histamine reaction and when that happens, it comes out any which way it can, including through tears. If a guy had seen me yesterday, he would have thought, WTH?? I feel like this illness has broken me down. My spirit. Other times, I soar, but lately not so much.

When I read your recent post about wanting a boyfriend and being disabled and turning to a disability support group, it hurt my heart because I know your pain. Many on here do. Those who are lurking in the shadows. We all know it. You, me and so many became sick when we were teenagers.

Camels milk. I would have to see where to get it. That is the thing about this crazy illness. One minute something works, the next, it doesn't. It might have not worked even without the theonine. I can't tolerate theonine for the life of me.

I know I have mast cell disorder. I know because food is like an assault on my body. I itch everywhere and it's not normal. I can handle water. That is it.

I was very lucky with my therapist. She calls me to see if I am okay and emails me. She has the biggest heart. She knows I suffer and has also seen my thrive.

I am so sorry you are going through this too. This illness robs us of our lives. Sometimes I feel like it steals my soul. It's not like any other disease. Do those with MS have all of these food allergies, sleep issues? I am not sure.

This is one crazy screwed up illness and someone needs to get on it now. We are in the shadows and the people who could be helping us are in the dark with no lightbulb.

 

[*GG*]

Sorry for all you are going through. Gentle hug I would suggest saying sleep is your #1 issue, and then when you mention the rash interrupting your sleep, perhaps both can be addressed? My mother says my fathers

GG

 

[Little Bluestem]

I go and see my CFS doc on Wed and the office told me to decide on one reason I am coming in. In other words, choose one thing to discuss. Really? How with this disease? One thing?

One thing? Really? How with this disease? And I thought it was bad when my doctor began restricting patients to 3 things.

I am too exhausted (and maybe too old) to even care about having a boyfriend anymore. If I had the energy for a relationship, I might just want a friend. I have a couple of long-time friends I still talk to on the telephone. One I even visit occasionally - and more occasionally all the time. It would be nice to have someone to do things with, if I had the energy to do things, without the drama that can go along with boyfriends. Maybe there would be less drama with older men? Enough rambling.

 

[helen1]

So sorry to hear about your hard times, Spitfire. The itchiness sounds dreadful. What often helps me when I feel really down is to put myself in nature and to focus on the song of birds, river sounds, ocean waves, trees rustling... It's very soothing and I always feel better. Often it's just on my back deck, sometimes a few minutes walk into a trail to sit on a rock or sit on a bench near the ocean. Talking with a friend is usually helpful too. Sending you hugs...

 

[Misfit Toy]

Thank you! I agree Little Bluestem, a good friend is always helpful. And Helen, nature always helps.

I took medicines last night that put me in a tailspin. Singular, Zantac and Zyrtec. Well, I became so deathly ill and drugged on top of horrible GERD that came on, that I had to call a friend at 5:30 am. I have an extremely hard time asking for help and I never call her with an issue. She had to come pick me up and I am staying at her house. It's amazing how nice it is to be around people. I forgot. I miss it.

Tomorrow I go see my doctor and he knows I am in bad shape. We shall see. Right now I am just so grateful for my friend and husband. So grateful.

 

[Misfit Toy]

Update yet again. My doctor said it's not a shot in the dark if I have mast cell disease, but he is trepadatious because it's not easy to treat and the treatments are a hell of a lot of antihistamines which can you make you extremely exhausted...not what I need, or singular for asthma, which helps but causes depression and suicidal thinking. Then I read online how many people can't handle Gastrocom. The treatments are not easy and the one woman I spoke to at the mastocystosis society is a nightmare. She talks my ear off. I keep thinking, "are you really sick?" Also, she is a bit of a, "You must do this." She was talking down to me the other day and NO EFFIN WAY. What am I, your child? Not happening.