First, do you live alone? I have been in a very close relationship for 11 years. My husband moved out last week. I don;t remember what it is like to live alone. Plus I am housebound unless someone helps me go somewhere. This is requiring me to find courage I didn't know I have. What do you do?
Second, I am in a wheelchair and not very mobile, though I am working hard to walk again. This is hard. I guess I would like to hear of others in this situation, if there are any. Thanks. Aliyah
Posted by Keebler (Member # 12673) on :
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Aliyah,
I'm so sorry to hear about what has happened.
Believe me, you can still explore interests and friendships.
I've very tired now and it's after 11 - so I'm on computer too late.
This can get better. Really.
Breathe, listen to some nice music, and dream of good things to come.
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Posted by aliyalex (Member # 6976) on :
Thanks for your response. I am a very positive person. I know this is just a hard and shocking hump to get over. I think it is harder b/c my husband still lives on the property for now, and checks on me frequently during the day.
I want to get past my dependence on him. Not quite sure how, yet. I will find a way. I have to. He moves July 1.
What do others do? Posted by kam (Member # 3410) on :
So glad to see this post Awesome Ali. Hopefully, you will get lots of good ideas and support.
So many things you are having to deal with right now.
But, just since you joined the hiking/mover's club I have seen a lot of improvement. So cool.
RE: Coping
When I first came down sick, it was rare I could get out of bed and move.
My arms were to weak for a wheel chair.
I eventually had a power chair donated to me.
Big, Major Help.
My doctor also signed the forms I needed to get household help.
Big help. Major help.
I was not able to fix meals for myself at that time, wash dishes, do laundry, etc.
It is still a struggle using the brain to figure out what needs to be done, who to ask to get things done and what things I can do myself.
I still think I can do it all and still want to do it all...but not realistic.
I find I do better on my own. I can go at my own speed, pay better attention to my body and brain and it is less tasking on my body and brain.
I seem to get an adrenal rush when someone comes to help....so nice to have the help.
But, then I am worn out for several days afterwards even though they did the work. Go figure.
And I feel like less of a person because I am not able to take care of things myself. Still working on that way.
It is kind of catch 22. So thankful for the clean house and the help yet it doesn't seem right to be on this end of things.
I also find that I feel safer with some people than I do others. So, stay away from those I do not feel safe with.
On line, it shows that the grocery stores have the service of delivery food.
Where I live, they have not started this service yet but the same grocery stores do have the service in other areas.
I recently purchased one of those tools to help pick up things too. Wished I had gotten one a long time ago. Makes life easier.
Well. That is a start.
You will be OK Ali. I can see you have a strong will to improve your quality of life. You will get there.
Posted by kitkat32 (Member # 9682) on :
I was married to my first husband when I first became ill. (12 years ago next week)
My sone was just 2 years old when I left. I had my own apartment.
It was very scarey and lonely at first. It took some time to get used to it. I didn't realize how dependent I was on just having someone else around me.
One thing that helped me is I developed a routine. I know your kind of immobile right now but if you can get yourself on a semi daily schedule it might make it easier.
I made a list of things I needed to do weekly and stuck to it. Even if I was really feeling crappy I at least attempted my list. It helped me to feel more independent.
I am sorry your going through this. I eventually came to like living with just my son. I got use to being alone.
kit
Posted by aliyalex (Member # 6976) on :
Thanks Kam and Kit. Your words and experience mean so much to me. This has been my worst day yet. I can't remember when I felt so down.
Next week I fly by myself for the first time to see the LLMD. I don;t know how I am going to do it. I just know I will. Thanks again. Love, Aliyah
Posted by LymeCFIDSMCS (Member # 13573) on :
I live alone. It's not easy. There are a lot of challenges. I think right now, in this transitional period, it's a great time for you to reach out as much as you can. That's the best advice I can give: reach out and keep reaching out.
I don't have a lot of energy to talk on the phone, so I have set up a system with a couple of friends where I call and leave them messages (they don't pick up) and they call and respond. I do it daily, so that I can have some sure contact with the outside world. It sounds simple, but it really helps.
Any systems like that that you can set up now will help you in the long run. Another idea is to ask groups you are interested in to set up a speakerphone so you can participate if you can't go to live events. Some of my friends do this and it helps a lot.
Posted by Tracy9 (Member # 7521) on :
Many of us go each night to Lyme Chat and find it HUGELY supportive. I invite you to join us, it is a wonderful group of people, and we get used to seeing each other each night, so we keep up on what's going on with each other.
Many of us have even met each other and or talked on the phone. It helps SO much with the loneliness, and suddenly you find you have a huge support group right there for you every night at 8 pm.
I have been single for 12 years now. At first it was scary, and I was still able to work at the time, and really didn't know I was ill, but I was.
When I got so sick that I was almost housebound (should have been) i had to rely on help from friends and my church.
I also learned who my real friends were.
I agree with Tracy about going onto Lyme Chat. We're there every night from 8 PM EDT until???
We make friends, laugh and cry together. We help each other over rough spots and get plain silly at times. We would love to have you join us.
Sometimes it's a bit difficult to get on, and after you do you need to click float at the top left of the screen, then click the box at the top right that enlarges the screen.
You can also enlarge the text size, which I find helps a lot.
On another note, a website that has tons of helpful info, if you can get past the title is www.cfidsselfhelp.org.
There are lots of articles on coping and there are also online courses. Just because you have a Lyme dx don't let it scare you off.
I took the class when I still had a CFS/FM dx. I am now a moderator of both the beginning class and one of the ongoing support groups.
Summer groups are about to begin. Not sure if it's too late, but it can help you find ways to make the best use of energy, cope with your symptoms, track your progress, etc.
Posted by aliyalex (Member # 6976) on :
Thank you all. Very helpful. I will try to remember 8 PM.
It has been a tough 2 days. I'm going to go read something inspirational. Aliyah
Posted by Tracy9 (Member # 7521) on :
8 pm Eastern time, so it is earlier for you.
Posted by StinkBug (Member # 5191) on :
Howdy, I was on a lot in 2003 (dx'd and treated in 2004) and so very thankful for this group and the amazing people whose names are familiar. Thanks also to those who joined since and are dedicated.
It was because my husband has left that I also came back and found the chat tonight. Just what I needed.
I'm really concerned for him because he's also a Lymie and is now experiencing depression and anxiety and it's way more than "relationship stuff". His behaviour, is, frankly, bizarre at times. And I'm no stranger to depression/anxiety, used to be a counselor and also experienced the above.
Part of what has been horrible for me is the fact he's reached out to (no exaggeration) around 40 people (shared friends and family for the most part) and discussed my personal healthy challenges which are private. Private with me and my LLMD and anyone I choose to tell. Such as having recently withdrawn from 8 yrs of opioid meds in order to cope with Lyme pain.
I tell you all because I know I'm not the only one and you're kindred spirits. Yet there is also some anonymity (some have met me in person and that info is not an issue).
But this is (in part) why the pool of shared friends have chosen to not contact me. So much hurt and betrayal. Nothing I can do for him but support his path, take good care of me, and be smart about the future. It's been incredibly isolating due to his "keeping" all the friends and I live rurally. He moved to be with family, job, friends. I'm an immigrant and well, enough of my story for now.
I'm scared and been safe/comfortable in the family home for 6 months. No kids but 4 cats, one with health issues. It's the great unknown that is the biggest stress. Ain't it always the way, eh?
Just keep sharing what is real, how one feels, what one thinks. We gotta hope this will all work out, for all of us. I know my Lyme is doing so much better (currently on no treatment other than supportive physical therapy) and I count my blessings.
It's so hard to go through several years of Lyme therapy, get out the other side towards much increased wellness and to see him slip away... physically, emotionally and mentally. Looks like I won't have a chance to help him on the day to day.
We are in counseling and he just saw his doc/duck who used to be mine and doesn't believe in Lyme. He's on antidepressants and an anti-anxiety now.
Stay in touch, on the good days and not so good. It's all ok. My best, StinkBug.
Posted by StinkBug (Member # 5191) on :
quote:Originally posted by StinkBug: (sorry I forget how to edit after I already posted... dang!) ,snip>[he] discussed/es my personal health challenges, medication past and details which are private. Private with me and my LLMD and anyone I choose to tell. Such as having recently withdrawn from 8 yrs of opioid meds in order to cope with Lyme pain [is one example of private info] and carries social stigma, despite my never abusing them.
Wanted to rework that paragraph. Thanks for your patience with this rusty Lymenet member. Stink.
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