How Do You Stay Hopeful And Suggestions For Feeling Useful

[p8d]

Hi,

I've been ill for just over a year. Diagnosed with OH/POTS in March 2015. Recently diagnosed and started treatment for Lyme disease. I know that with both you get good hours/days and lousy hours/days. I also know that Lyme causing dysautonomia is controversial. I also know about the Herxmeier reaction causing flares and new symptoms in Lyme. I find myself struggling to feel hopeful during the bad hours (haven't put together a whole day yet) and just wondered what anyone else did. I also have always felt the need to be needed/useful and given my present state struggle to find something I can do. I've done some transcription of bird phenology records but would love other ideas.

Thanks.

P

[Guest ANCY]

I don't know if you are a Christian, but I always look to my Bible to find my hope in Christ. I like Psalm 42:11 Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God.

Based on this verse when I am feeling hopeless I try to find things to praise and thank God for. Its hard to be thankful and in a sour mood at the same time.

In terms of feeling useful, I feel your pain! I'm now able engage in life a bit more but this last year I could not do much of anything. I try to find little things I can do, even when I couldn't get out of bed. Sending cards or texts to encourage people, praying for others, these last couple months I've been drawing color pages for my Dad's Jr Church class. Smile. A simple smile can lift someone's heart. I also spend a lot of time reading good books. I enjoy reading books that will help mewith my future goals, ie child rearing, home school, homemaking. Helps to keep me focused on recovery and not the bad days.

Hope you are able to see some improvment soon, having lots of bad days is hard.

[kellygirl]

Hi p8d,

Getting through the rough times or bad days.... Things that have helped me

• making a gratitude list... I list 10 things I am grateful for and I think about those things
• use self-guided imagery to visualize myself in a peaceful, calm and happy place... (drawing on an old memory of something I had fun doing, or imagining myself laying in the grass, looking up at big white fluffy clouds floating against the blue sky... putting myself in that place and feeling, smelling and seeing, and hearing the surroundings)
• praying
• calling my best friend on the phone and chatting
• changing my perspective on my experience of "bad" days. Actually being ok and finding comfort in loading the couch or bed up with big fluffy pillows and blankets and hunkering down to watch TV, listen to music, or read, while hydrating and eating and allowing my body to restore itself during this period of time.
• allowing myself to cry and be ok with it.
• going to my 12 step meetings to have a fellowship and combat negative thoughts and gain support 6 days a week. If unable to drive someone from the fellowship picks me up. If homebound someone or a couple of people come by after the meeting or talk to me on the phone.

On feeling useful

• Keeping my house clean
• taking care of my dogs
• baking for my neighbor when I bake for myself
• being supportive of other members in my fellowship
• offering support and my experiences here on this forum
• and having faith that though not apparent to me yet, there is meaning in this whole experience, that my higher power has a purpose for me that he is preparing me for and that if I am patient that purpose will be revealed.
• also realizing that my sole purpose in this lifetime is to stay focused and engaged in the current moment and to turn the "fight" over to a power greater than myself.

When I was first diagnosed, I was extremely depressed and focused on what had been taken from me because of this illness, and focused on the loss of function that I was experiencing, but now I try to stay focused on the positive ways POTS/dysautonomia has helped me to grow and change, both in lifestyle changes and in my spirituality. There are days where I still get down, get frustrated, get angry... but it ok, as long as I don't stay in that place.

[Debbie Rose]

Great Suggestions all !! I have had debilitating fatigue and fog since 1995 if I overdo. My fatigue is there every day and my depression came before the fibromyalgia.I have learned to do things in tiny increments of 10-15 minutes on good days and resting an hour in between these; and reassessing how I feel. On bad days it a Comedy DVD and hunkering down with warm soup and plenty of fluids.

Over the past tens years as things changed with new symptoms coming and going, my only goal was to continue to work...a necessity financially but also because as a health coach I was able to talk to people who wanted and needed guidance-hearing them get excited about new information, encouraging those who are going in the right directions or just supporting them emotionally was very rewarding and since May with all that has gotten worse with the anxiety and stress I am not able to do it right now. I miss it

Over the years I have set up things to enjoy-like bird feeders and identifying all the birds. Hummingbird feeders and caring for my animals. Acceptance is hard sometimes but just staying in the moment and dealing with today helps. Tomorrow there will be differences and maybe a new med or test to help us out.

a 12 step program had a saying-something like "Don't give up until the miracle happens" that somehow makes sense to me

Debbie

[ks42]

Feeling useful is important to me too. And unfortunately, I'm on disability and committing to anything on a regular basis is almost impossible. However, I've found that doing volunteer work is possible for me - especially on the good days - because I live in an area where there are so many different types of volunteer work to participate in, many of the activities can be done reclined in my wheelchair, and I don't have to commit to anything on a regular basis

I also agree with the suggestion that if you're religious, attending services / being part of a congregation can be great as well.

Do you have support groups for chronic illness near you? I know there are some Lyme support groups that meet regularly in most major metro areas - you might want to look into that, as I went for awhile when I had Lyme and it was really helpful.

Another really amazing thing that I did for myself was get a puppy this past spring. We didn't know how I'd handle the added responsibility, but I do have someone with me who volunteered to care for the dog on days that I couldn't. But, being able to care for a dog has been extremely rewarding and therapeutic. When I'm not feeling well, I have a fluffy puppy usually laying next to me in my chair or at the foot of my bed. I can play with her most days too, as it's pretty easy to throw a ball from my chair And when I feel well enough, I actually can work on training and sometimes even go for short walks. I swear, one day I'm going to get better and we're going to do agility!! She's going to be huge, so we've joked about teaching her to pull my wheelchair around. I have this image of her pulling my wheelchair and all of a sudden taking off after a flock of birds, lol.

Hope that helps a little. I had Lyme twice in the past, and know how awful it can make you feel (and of course it's a double whammy combined with dysautonomia), so I feel for you and hope it gets better soon! My Lyme did improve - drastically - once the herxes were over, so I'm hoping the same for you!