Housebound BY CFS.
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Hi everyone.
I'm new here as of today. I''ve had cfs since 2000 and it keeps me at home.Its that severe.There are a lot of ME/CFS sufferers out there just like me,they have the severe version.Its boring to say the least.I try to stay motivated at the best of times when I can.Trying to keep busy all day is hard work.I'm glad there are forums like this one to keep us all in contact.I'm very thankful. You are welcome to compare notes anytime.
Regards Chris.
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Welcome Chris. I am mostly housebound as well, though I never really feel like I "belong" in the severe category.
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Hi river.Thank you.It keeps me at home.
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@Dencds hi Chris. Good to see you here. I'm mostly housebound too. It can be very boring I agree!
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@Dencds It is the social isolation that this disease brings with it and the disconnection with the community. It can be very lonely. I totally understand. Social media is very important to us as it keeps us all connected and communicating with one another and provides an outlet to provide support and understanding.
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@donnamarie .I agree with you there. For extra support I get a daily phone call from red cross.Every bit helps.
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@annielorrai Hi @annielorrai .I do a lot of reading to get through a day.Finding other things to do that doesnt drain the energy can help.
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@Dencds that is lovely. We need all the support that we can get!
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Welcome Chris, I'm mostly housebound also. Being able to connect with others in this forum helps to break a bit of the isolation every day.
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@Dencds Hi Chris: glad your on board. Like you, I have been living with ME/CFS for a very long time. It is a perplex illness that still baffles me.
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Welcome Chris! I'm housebound too. Social media is my lifeline, it's about the only way I feel connected these days. Like you, I try and find things to keep me occupied, but that's not as easy as it sounds when you can't move off a couch.
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@Dencds hello Chris and fellow housebounders ...I just found this section...I am mostly housebound too.
I deal with it better these days, as I’ve been unwell for such a long time like many of you
Yet for many many years way back when .... it was devastingly hard
Docs kept telling me to find acceptance etc etc....
I did not ever want to give up trying to get better. So while I have a level of acceptance now.
I still never give up on the hope of improving more again someday.I find it so much harder on days where I let myself think to much about what I have missed out on ...so keeping in the present moment of just being, is so super important. This is Not always easy to do though, as we have all missed out on so much life stuff.
I hope today is a “going ok day” for you all
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@Tess said in Housebound BY CFS.:
I did not ever want to give up trying to get better. So while I have a level of acceptance now.
I still never give up on the hope of improving more again someday.Hi Tess. I really relate to struggling with the complexity of acceptance and could be a topic all on its own. Since becoming housebound, gratitude for the small things is a much easier emotion for me to tap into as acceptance can sometimes feel a little too close to pessimism or counter intuitive to the ongoing struggle for recognition and research. For now I’ve kind of settled into striving for moments where acceptance and hope are possible along with acknowledging that healthy unacceptance has its place too.
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@gretch said in Housebound BY CFS.:
@Tess said in Housebound BY CFS.:
I did not ever want to give up trying to get better. So while I have a level of acceptance now.
I still never give up on the hope of improving more again someday.Hi Tess. I really relate to struggling with the complexity of acceptance and could be a topic all on its own. Since becoming housebound, gratitude for the small things is a much easier emotion for me to tap into as acceptance can sometimes feel a little too close to pessimism or counter intuitive to the ongoing struggle for recognition and research. For now I’ve kind of settled into striving for moments where acceptance and hope are possible along with acknowledging that healthy unacceptance has its place too.
@gretch yes I absolutely agree with everything you have said!
I wrote a longer post earlier and deleted as I’m a bit to weary and I’m not sure it made sense.
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@Tess Totally get it. Words are ridiculously hard some days and pulling whole sentences out of the fog has to wait for the next energy packet. Hope you get some recovery time.
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Housebound here too, sometimes in winter, bed bound. I find it incredible there are so many of us, but I’m yet to find a GP who believes me when I describe what my life is like. Just need more exercise they say . . . As they look at me in disgust. I cannot wait for there to be a diagnostic test for this, I hope I live long enough. I’ve taken up adult colouring, I used to draw and paint but it started taking too much out of me, so now I colour other people’s drawings with pencils, no mess, and can be done in small sessions. I used to write too but alas my epic novel will never be finished. It’s gotten to hard to even use my imagination.
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@gretch said in Housebound BY CFS.:
@Tess Totally get it. Words are ridiculously hard some days and pulling whole sentences out of the fog has to wait for the next energy packet. Hope you get some recovery time.
I did thank you @gretch i have had a few days of not much and just turned this back on. Although I’m thinking I’ll have a look see and get off again soon.
I hope everyone here is having an ok day today
As frustrating as it is for us not to be able to keep chatting away with everyone about everything for as long as we would like tooooo at least we have this and we have moments!
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@Siren said in Housebound BY CFS.:
Housebound here too, sometimes in winter, bed bound. I find it incredible there are so many of us, but I’m yet to find a GP who believes me when I describe what my life is like. Just need more exercise they say . . . As they look at me in disgust. I cannot wait for there to be a diagnostic test for this, I hope I live long enough. I’ve taken up adult colouring, I used to draw and paint but it started taking too much out of me, so now I colour other people’s drawings with pencils, no mess, and can be done in small sessions. I used to write too but alas my epic novel will never be finished. It’s gotten to hard to even use my imagination.
Welcome @Siren to us housebounders... It is really difficult to have to stop doing the things you love. Maybe if you feel like sharing some of your artwork it would be great to see it?
There is another section here about posting arts an crafts work somewhere....
I’m pleased you get some enjoyment out of doing the colouring, I’ve been meaning to get into that. Must get some.
I’m hoping someone here can recommend a good Doc for where you are..... Have you called the Emerge number?I wish I could share my GP with everyone she doesn’t take any new clients. While she doesn’t have the all answers she listens and understands now what this illness does.
When I was first ill one of the GP’s I seen then basically told me to eat more broccoli among other ridiculous things.
I’m hoping someone can get you onto someone who will take you seriously! As you really need an understanding GP as this illness involves so many different medical areas.
I hope today is an ok day for you....
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@Tess thank you. Where do I find the emerge number?
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@Siren Hi Siren
Emerge's number can be found through their homepage:In the menu, there's a "How to get Help", and under that there's the Infoline (1800 865 321 - there's an email options as well, information@emerge.org.au) - there's also the Telehealth Nurse Service (fill out the form and I think they call back).
I hope that helps - if it doesn't do the trick, let us know and we'll assist as best we can
