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Posted 5/26/2014 4:51 AM (GMT 0)
Being ill for the last 14 years has seemed to ruin my life. I have not had the health or energy to keep a full time job or build a relationship. The only living family I have is a father who is unhappy with me unless he hears that I am working hard and saving lots of money which is anything but the case with my medical problems and the current state of my occupational field.

My last boyfriend dumped me 6 months ago after 8 years together. He was becoming even more hopeless about my health problems than me and felt that financially and physically I was on my way to becoming a burden.

I have genetic deficiencies in detoxification, severe hypothyroidism, heart palpitations and insomnia when trying to treat the thyroid, constant infections, possibly lyme, and now anxiety and depression. I've been seeing a very expensive ND the last two years who helped some problems like hormonal but I have greatly worsened (thyroid and hashimotos) since experiencing severe stress and grief related to having to move from my last home, loss of my boyfriend/best friend and dealing with my job demands.

My ex tried supporting me with understanding my condition and helped with grocery shopping, food preparation while I was at work, and helped with many other areas of my life. In the end it was not for him and he chose to be directed by his widowed mom who wanted me to move out of her son's house so she could live there in the winters.

Before him there were boyfriends who cheated on me or were very selfish people and even one who abused me when he thought I was faking SVT. I'm left with little help I would every find a guy who is sensitive enough for me.

A month ago, I realized I can no longer "push through" at work and have to take unpaid medical leave. Now I can not manage to do much more than some stretching exercises, basic household chores and medical appointments theses days.

Dating or trying to find new friends isn't an option when I feel so sick though I desperately need a support system. Perhaps interacting online here is best for me. Or if anyone knows of a chronic illness support group in the Phoenix area, I would appreciate it.

Post Edited (lilyofvalley) : 5/26/2014 7:09:53 AM (GMT-6)

Posted 5/26/2014 10:49 AM (GMT 0)
Hi Lily,

I am so sorry for what you are going through. Are you being checked for lymes? A lot of people who think that they have lymes, end up having fibromyalgia. It robs you of energy and leaves you in a lot of pain. Have you ever been bit by a tick?

Realizing we can not do what we use to do is very difficult. And depression goes a long with that. Keep on top of the depression for now. Keep it in check. Visit your doctor routinely and maybe a counselor too.

Keep moving, keep stretching. It really helps. I walk daily, noting strenuous, just around the block, though I have been mushroom hunting so I have been walking more. IT always makes me feel good.

I hope you find a support group in your area. I am sure that there are many of them. Google it and see what you find.

Feel better soon and keep posting.

Hugs, Karen...
Posted 5/26/2014 12:38 PM (GMT 0)
Thank you, Karen.

I have been tested by the ELISA and it came back with no real positives from what I can see. My ND said the results show it may be on its way to becoming positive and will test again when the CD8-CD57 comes up to at least 60 I think. That was over a year ago and those markers have been consistently low on my bi-monthly blood work.

I do not think a was bit by a tick (plenty of mosquitoes), but I saw one on my dog during a trip to northern Michigan 20 years ago and returned from the trip with flu type symptoms. My cognition and energy were challenged changed for many months after that. Then I'd say felt the best ever in my life 4 years later for about 2 years until stress and grief grabbed a hold of me and have kept me in a progressively ill state ever since.

Also my mother and sister (now passed away) suffered from fatigue and depression. The thought of my ND again is that lyme can be passed from mother to her child.

I do have similar symptoms of fibromyalgia though my muscle and joint pain come and go depending on activity level. I can't handle much activity, lifting weights, or repetitive tasks. The Rheumatologist said fibro pain doesn't disappear like that. Any fibro drugs tried cause heart and insomnia issues for me.

I will work on finding a counselor. In the past I've felt frustration with their lack of intellect regarding my situation and being misunderstood sometimes can make me feel worse. At this point I don't think I could feel much worse emotionally so I will give it a shot.

The light exercises: stretching I do faithfully and short walks I do until my throat gets very sore and pressure builds in my head. It's nice to be outdoors at least saying a quick hello to some neighbors, though I'm physically not tolerating any type of real physical or social activity now.

There is an emotional component here along with a very real physical condition. My hypothyroidism is extreme. A brain MRI is on the list of things to do among many other expensive treatments.
Posted 5/26/2014 12:48 PM (GMT 0)
I live in Michigan. We have bad ticks this year. My husband found two on him after we went mushrooming. So I get scared to go out in the woods.

I sure do hope you feel better soon. And I hope that the testing gives you some answers. I have fibromyalgia, I have a lot of pain and fatigue.

I wish you the best...

Keep posting, it actually helps to get your thoughts down.

Hugs, Karen...


PS I have lilies of the valley in my yard. Wild and regular...
Posted 5/26/2014 1:13 PM (GMT 0)
Karen,
Oh you have lilies of the valley in your yard. Lucky you! The smell is unbelievable.

Do you mind me asking what treatment works well for your fibromyalgia?
Posted 5/26/2014 1:32 PM (GMT 0)
I take pain pills, Adderall and antidepressants. Sometimes muscle relaxers. I take oxycodone 10mg. It helps, but I still have pain. But not as much. The Adderall keeps me awake during the day, then I take ambien to sleep at night. I totally had my days and nights backwards.

That pretty much covers the fibro. I think that the antidepressants help as well with some of the pain.

I have a medical marijuana card too so I smoke to help with pain and depression.

I hope that this helps.

Hugs, Karen...

Oh, I walk daily too. Plus stretching. The muscles get ridged if I don't keep moving around. I think that the walking really helps a lot. But I can't walk a lot, just little.
Posted 5/26/2014 3:59 PM (GMT 0)
Lily a depression group may be very helpful for you. Many people at mine, including me have chronic pain and illness.

Peace and strength
Trina
Posted 5/26/2014 4:17 PM (GMT 0)
Lily-

I'm so sorry you are going thru this.

I've had 4 back surgeries and am currently in peri menopause. I go to work, the grocery store and I come home. Then I just rest. I do one household task a day to help conserve energy. I have 2 teens and I can't even try to keep up with them.

I totally support finding a counselor. Mine has helped so much. I've been with him 12 years. It took me a while to find the right one. Don't give up your search- it's well worth it!!

I send big hugs your way. Keep writing here. My HW family has been incredible support for me!!
Posted 5/26/2014 4:36 PM (GMT 0)
Welcome to the group. I, too have a genetic condition that can make everyday life challenging. The biggest thing I can suggest is take the drs with a grain of salt. They mean well (sometimes) but they aren't experiencing the same thing. Try to not let the pain control your brain. Activity is important. It doesn't have to be strenuous but you need to be moving around. More than one walk. Even if it's walking around the house every 30 minutes. You could benefit from a meeting with a physical therapist. I learned lots of stretches and exercises that I can do without injuring myself.

Depression can add to pain. You may need an adjustment to your medications. Cymbalta may be a good for for you. It treats pain and depression. When I went in to adjust my educations I did a lot of research on how different medicines work within your biological chemistry. I swapped from a ssri to a snri and that helped a lot. You have to be your own advocate. Remember your dr works for you.

I know you say you don't have the energy for a social life but being social helps. You can invite friends to your home. There are groups you can join that don't involve anything strenuous. I recently joined a book club. Put google to use and see what your area has to offer. You'll be surprised how just getting out of the house for something fun can help. Bad health (and believe me, I know about bad health) doesn't have to rule your life. It may mean you have to scale certain activities back but you can still have a life. When I'm feeling particularly beaten down I tell myself to suck it up because so many people have it much worse.
Posted 5/26/2014 4:39 PM (GMT 0)
Hello .......

   Your HW name reminds me of my childhood years while growing up in my Grandmothers two-flat. She had vegetable gardens, cherry trees, a mulberry tree and "lily of the valleys" growing wild under most of the two Cherry trees. Those shade-loving flowering plants have an unforgettable aroma.

   I can and have shared so many of the feelings you've talked about - and similar experiences too - at least in my last relationship. I wish you were getting the kind of support you need from your Father - and it sounds like a support group would be of great benefit to you. However, I know very little about your area - so I have no group suggestions.

   I know about loneliness ... and you do need to do something about it. I'll give you a little of my background, and it may give you some ideas.

   I have lived alone for over 20-years - and did work alone for 20+ years out of my house. During all of this, I have had a dog. Gizmo, my dog, is only 3-years old, and before him, I had another dog for just over 15-years ... and another before him. So ... there always has been movement inside my house ... no one to talk too but a warm body around really helps.

   I have had stage #4 prostate cancer for over 3-years along with kidney problems created by cancerous tumor blockage ... and then COPD for the past 7-years or so. The chemo and hormone treatments have typically eaten away muscle - and the prednisone I've been on for two years hasn't helped.

   I started an excercise class a month ago. It really has helped my legs to feel more stable. I've gotten some strength back into my quads, so it's not as awkward walking up the stairs now. There are people there, but it's not a socializing type of thing. Again though - it helps just to be around warm bodies - if you know what I mean.  

   I would suggest a low-key excercise class or group. No matter how little you can do, you'll gain benefit from some amount of excercise - and it helps emotionally too.

   I do belong to a support group (7-months now) for metastisized cancer patients. It gives a strong feeling of mutual understanding. There's very little you have to explain to anyone. And everyone seems to care - and has a feel for what you're going thru. I would highly suggest finding a group like this to join. I did belong to a second group and just stopped going to that one. It became more of a debate group - and it isn't what i needed. You may have to try more than one - but please try.

   Many years ago (15), I joined a support group for divorced or widowed people. Over the years, there have been many changes - but some of us still get together for dinner at times ... and here again, it's a good thing. It's no more of a relationship than a semi-close friendship - but it helps to reduce the loneliness.

   I understand the position of dating or finding new friends - but especially the dating part! Physical limitations can be terrifying if you're meeting someone on a one-to-one basis.

   My long relationship temporarily ended early in 2004 when I started treatment for my initial cancer diagnosis. She took off while i was going thru 3-months of treatments. Then she came back - and I accepted it!

   My cancer seemed to be gone for close to 6-years - but when it came back again - and spread - she took off again! I know the hurt. I know the reluctance to expose myself again to that. So ..... I think I have an idea of where you're coming from.

   about a counselor. I've used three different ones in the past. Two were good and one wasn't. Please give it a try to find a talk therapist. Usually, that means a psychologist - but it could be a psychiatrist or ???

   I hope you can take some of the experiences I've mentioned above - and find a few that could be of some value to you. Personally, I think the talk therapist, the support group and some type of regular excercise would be of great help.

   Interacting, online with HW, could be a very comfortable and non-threatening way of reaching out to people. It has been a part of my routine for close to a year now - and it fills a niche very well. There is a built-in anonimity here that works. I feel like i have close to a dozen friends here that i can relate to ... and yet, I think I know only one of their names on the Depression Forum - but that's perfectly OK! It still works.

  

Sorry this is so long - but hope it helps.

Rob & Gizmo

 

Posted 5/27/2014 2:11 AM (GMT 0)
Thank you everyone for the supportive replies. I will work on finding some counseling. There is a treatment I looked into today that may give me some hope called "brain based therapy". It is used to treat conditions like depression, auto-immune, and thyroid disorders. I hope it will not be too expensive or time consuming. I just have to find something that works!
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