Anyyone want to join a pity party? Oh poor me.

[blimeyitslymie]

How do you guys get through the day? I am struggling so much; it is so hard to take care of the kids, home, husband, etc. I am usually in bed before my kids at 8; but some days I am exhausted from the moment I wake up. It is so hard for me to get time to rest during the day.

Even though I am exhausted and in tremendous muscle and joint pain, I continue to try to exercise on the treadmill, slowly, slowly for 45 minutes a day. I stretch really well before and after; I usually feel worse (more fatigued and pained) but am slogging through.


Sometimes I hurt so much I feel that I have lost the capacity to be loving. Isn't that sad? Has anyone else felt that way? I feel like the best I can give is not enough. With an autistic son (with whom we are having trouble with his freshman year at HS) and a loving but demanding 10 yo daughter, and a husband who has tried to deal with my 18 year illness, I feel depleted. I am not the mom I always wanted to be. I want to hide in a corner and just lick my wounds.

So I try to call friends back in my last hometown, to try to cheer myself up; I try to listen to music; I try to share information about Lyme to educate others; I try to pat myself on the back ... I try , I try, I try.

I really just want to feel well again. Gosh, I don't even remember what that feels like. I haven't had a pain free, fatigue free day in over 18 years. I feel like bartering ... I'll give up my left arm, if I can just feel better. You get the picture.

I am still trying to find an LLMD. It seems there are none in MA. That the good ones have closed up shop because of all of the crap they have to put up with. I have recieved recommendations for docs, all of whom I've heard of, that are at a minimum, three hours drive away. I've done that before in my life, but now I can't do that.

So the upside is that I'm not herxing, the down side is, all my SX have gotten worse since my IV's were pulled by insurance.

And I know that there is so much suffering in the world. So many people who have so far less than me, who are terminally ill, etc. and then, I feel guilty. Oh Blimey, how very productive. Intellectually, I know that guilt is a useless thing. Emotionally ... another story.

I wanted to be so much more in life, than on disability, just getting through the day to see another.

:(

[Sonsie]

I can relate to so much of what you say. Except that I've been sick since childhood and thus never had the energy to get married or have children. (I consider this a very lucky turn of events now.) You have all of my sympathy, believe me! I wish I could hire a fairy godmother to fix at least half of your problems for you. (Heck, I could go ahead and fix all of us here if I had a fairy godmother, couldn't I?)

Hang in there. I hope tomorrow will be a less frustrating, painful day for you.

[Buttons2]

Blimey,I think it's good to vent! You need some release & this is a good place to get it. Sometimes just writing it down helps to get a few toxins out.

I have one suggestion,the treadmill! Even going slow you are expending energy that your body just might not have right now. Maybe either cut back the time on the treadmill or ignore it every other day. I realize you are trying to get exercise but 45min a day is maybe a bit much? Just my thoughts.....heck my treadmill lives a very lonely existence! Buried in dust! I prefer to get outside & walk the dogs,sometimes this hurts but I force myself to do it & it's only a 15 min walk. Just getting outside is a change for me most days.

I think I've suggested before that you get some household help? Please discuss this with your hubby,you need help or you will slide downhill! And the holidays are coming,more stress! You're sick,you've had a big move to deal with,you have children to care for. YOU ARE NOT SUPER WOMAN!!!!

Guilt? That's a self imposed emotion. Just about everyday you take the time to read Lyme articles & pass on the info to others'. This IS being productive!

Life doesn't always go the way we had intended. So the best we can do at this time is perhaps to just accept our limits. This is hard I know!

Of course other people have life worse,the entire planet has it worse when you watch the news or read a newspaper! We can't feel guilt over what we have no control over!

Watch Animal Planet instead of news (one of my tricks). Find a hobby you can enjoy without getting stressed over it. And I would hope there's a support group in your area for parents with austisic children,if not at least try to join one online (I've no idea if you are active on the BT one).

Don't be beating yourself up! The bugs are doing enough of that aren't they?

Other people will not understand your pain & suffering,cause they're not in your shoes. But that doesn't mean you can't whine! Go ahead! Scream if it helps. You deserve better than what you have right now in your life,but somehow you've got to accept the limits. Learn to smile about something everyday.

What's the saying? I have Lyme but Lyme doesn't have me? Keep up the fight!

gentle HUGS Buttons

[blimeyitslymie]

To two very supportive, and kind women, who I only know through cyberspace. Buttons and Sonsie!

Thank you for sharing your experiences and thoughts. Participating in this forum (and venting) helps me a lot. Your replies are so appreciated.

I have started delegating household chores to hubby and kids (can't afford to get a service) and they are helping a bit. Mostly stuff isn't getting done ... :eek:

I am so ambivalent about the exercise; I used to be so athletic, I'd run 5 miles a day, was an avid tennis player and loved to ski and really loved hiking. All of that is now gone. My compromise is the treadmill and I walk really slowly. My former LLMD said it was important to exercise and stretch daily. When the weather permits, I take a walk on a bike path ... but frankly I have become so tick phobic that I find it hard to be in the great outdoors much.

Yesterday, my daughter, who just learned how to ride a bike (at 10!) asked me to go for a bike ride with her. Oh, I loved riding my bike ... we went for a half hour ride; I was so proud of her and she was so happy that I came. It's impossibe to say no to a bike ride with her; I am so unavailable for so much in her life.

I think the pride of seeing her finally able to ride and the beautiful autumn day, outweighed everything else. So, I was more exhausted by day's end; my knees, wrists, back and fingers hurt more than usual, and I went to bed earlier than normal (I excused myself with out of town guests visiting).

I guess I'm trying not let the Lyme take over my life. It is so hard; I just get so frustrated at the limitations. What's that expression, I am sick and tired of feeling sick and tired.

Anyway, I think I was losing hope when I first posted; Hope was a four letter word! But the venting, sharing, etc. helped me find some more hope. :)

Thanks again.

B~

[Sonsie]

How are you feeling today? :)

I have started delegating household chores to hubby and kids (can't afford to get a service) and they are helping a bit. Mostly stuff isn't getting done ...
This is a step in the right direction! If stuff isn't getting done, it is their fault, not yours -- though I do realize you are the one who notices.
I used to live in a community that had a college with a student job board. I used to hire cleaning help about once a month for very modest prices. The students who showed up were always really eager to make some money, and they were energetic to boot. Maybe you can find a teenager who needs funds?
My former LLMD said it was important to exercise and stretch daily.
This is true. But you are pushing yourself beyond the limit. Try 10 minutes on the treadmill only, and see if you notice the difference. I do treadmill twice a week (can't get free access more than that), for 30 minutes each time. I go slowly. I know if I push myself more than that, I'll sabotage my efforts, and feel bad to boot. I had to spend a good month, maybe more, before I could do 30 minutes.
I just get so frustrated at the limitations. What's that expression, I am sick and tired of feeling sick and tired.
Amen, sister! I know exactly what you mean when you say this. I doubt if I go more than 45 minutes at a time without some reminder of my limitations. Very grinding, very dispiriting. :( Hang in there. We will get through this together, somehow. :)

[timaca]

Hi Blimey, Sonsi, and Buttons!

It's been a LONG time since I've been on these boards. Some interesting things have happened....mainly that I met someone who had been ill for 18 years, tested for viruses, had high viral titres, treated with Valcyte and got well!

He suggested I get tested for viruses. Long story short, I was seen at Stanford Medical Center and am now on Valctye, an anti-viral drug.

I'm no where near well (still quite sick)...but that is to be expected. Hopefully, though, things will turn around soon.

Go to www.hhv-6foundation.org. Do lots of reading there. My story is in the testing section "My viral test results" and my Valcyte Journey is in the Treatment section. (I'm Timaca there too!)

A friend of mine, who also had lyme, is 8 weeks ahead of me in the valcyte treatment and doing very well.

Lyme symptoms and viral symptoms are the SAME!

Please consider getting tested for viruses too!

Timaca

[Sonsie]

Glad to know you're hanging in there! And good to see your name here once again. :) Not surprised to hear that you'd respond to anti-virals. I and a lot of lymies I know are already on anti-virals. Why? Because TBDs present much opportunity for viruses (shingles, HPV, etc.) to move in. The anti-virals thus help us a lot. But they can't do it alone, since TBDs themselves aren't viral.

Stanford is well known for its anti-Lyme bias and as recently as two years ago was teaching classes to medical students on why it is not real and how they should react if a patient asks for Lyme diagnosis. I'm glad you're getting help, but sorry that you're not dealing with anyone who can -- or is willing to -- figure out how much LD involvement you've got.

[blimeyitslymie]

So good to hear from you. Glad to hear that you are making progress. Every little bit helps. Hope your husband is better as well. I will look into your blog sometime next week.

As usual, I am overdoing it ... having family in for T-day and long weekend. But I love this season and am pacing myself...taking joy in creating a healthy but interesting menu and getting help wherever I can. My husband and kids have been missing me at supper (I'm in bed already) but have been more understanding of my limits.

Wishing everyone out there in Cyberspace a peaceful, joyful and healthier ToMORROW!!

Gentle Hugs,
Blimey

[Buttons2]

Hi everyone,ya know since I never even got a diagnosis of whatever is actually wrong with me I kinda drop out of sight here,I no longer even mention Lyme,MS or whatever to people I know-just tell them it's my arthritis acting up! That can explain alot actually, now that my memory has improved so much.....

Timaca,glad you are doing better & nice to "see" you here again.

Hoping everyone has a good day tomorrow,so much to be thankful for in spite of pain,depression & frustration!

Blimey, good to hear you are learning to delegate! Hmmmm,you mentioned healthy foods for turkey day? I'm sticking to traditional stuff but none of the baking I used to do,luckily my sons aren't much into sweets,but staying low carb is impossible so I plan to eat early enough to walk it off!

Very cold where I live right now,freezing-but we have sunshine & that's the best part! And hopefully it will kill off those beasties in the woods!

Pray all of you have a safe holiday,don't burn the house down forgetting how to cook,etc. Try to stop for a REST break as much as possible. Think ahead to Friday & can eat leftovers & relax with a big sigh......don't forget to take your meds! And give thanks to the doctor's trying to help....I've come to the conclusion they are as frustrated as we are probably (hmmm,first nice thing I've ever said about the med profession I believe?)

HUGS to all,Buttons