Really struggling with feeling like a burden at the moment

A bit of a rant and worry:

I somehow triggered the AVM in my right foot in August last year. I was signed off work as I was in severe pain and struggling to walk. As I was still on probation, work let me go at the end, and I have been unemployed since. And with the pain getting worse in my foot, I have been unable to help around the house (plus, it is coming up to the year mark for trigging the AVM). One year of constant pain - and unable to take pain relief is really dragging me down right now. :cry:

I was finally diagnosed in Feb/April this year and had my first round of treatment in May (although it hasn’t worked). I find the pain and swelling are getting worse and am really worried that treatment won’t work. Plus, with COVID delays, I don’t know when I will get to see the pain clinic to try and help on that front.

The worst part is I can do so little around the home. I am not earning, and I can’t even help with chores because it is so painful to walk most days. And I know it is putting a real burden on the rest of the family. I just feel really low at the moment. I am struggling because I don’t think they fully understand - they are all used to things that either get better on their own or after a medical procedure - it has been a real struggle with something that day in and day out is painful and just won’t improve.

I hate to be such a drag on everyone at home. I just wish things would get better and treatment will work. But if it doesn’t and I am not eligible for the hospital’s experimental treatment, I don’t know where I go from there? I am scared that it might come to amputation, and then I will be an even bigger drain on the family while I learn to adapt.

Thank you for reading - I just need somewhere to talk where people understand what I am going through and get these issues.

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I feel so bad you have to go through all this :pensive:

If we can choose, no one would like to have this terrible avm at all. I can understand how you feel. Some as you, I am afraid of being a burden to my family.

However, the doctor believes that the patient should relax and maintain a positive attitude during the treatment of avm. It’s really hard, and I’m also working on that.

I read in your introduction that you are writing a fantasy novel, maybe this is a way for you to make yourself feel better .Looking forward to reading your novel.

Take care, we will always be here. You are not alone.

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My thoughts are that this shows you’re a great person. Being bothered about this means it’s not your nature to sit by, so I think it is likely to be clear that you’re not an idler.

I’d also say it’s good that you shared this here because that’s what we are here for: the good and the bad, the ups and the downs, so feel free to rant like this whenever you need.

I also think it is good to talk to those around you about how you feel, how you’re worried about being a burden and also that you just don’t know where the end will be. If they know you, I’d hope they’ll appreciate the share. It is good to talk. If they don’t understand, then I hope over time they’ll get there. I’m sure it is a big shock for them as well as it is for you.

Oh, final thought, we should get some of the other @Extremity people reading your story because I know there are others who have gone through all of the emotions you’re hitting at the moment and it is tough. And painful.

Keep your head up because you’re worth it.

Very best wishes,

Richard

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Thank you! It means so much to be able to talk with people who get what I am going through!

I will definitely try and focus on the positives as well (I am sure it is half the battle). Thank you for being here and the well wishes! :heart:

Thank you Richard! It is such a relief to have found this site and know that I can speak about it with everyone. Thank you as well for linking me to the @Extremity group!

All the best!

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Hey Writerchick,
Ohh boy, do we understand? Unfortunately, more than we’d like to. But as I’ve said to many others before, 'We’re not here by choice. Nobody chooses ongoing issue with pain. Nobody".

I have to agree with DickD “…that’s what we are here for: the good and the bad, the ups and the downs, so feel free to rant like this whenever you need”. We’d all love it to be ‘Roses and Sunshine’ but that’s just not the reality. We know this because we live it too. Who better to offload to than people who know, people who have lived it. None of us have exactly the same story, but many of us have had similar experiences on this journey.

Merl from the Modsupport Team

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I know how you feel. I felt like a burden on my family because my procedures where so expensive. I tried to help and work as much as I could, but it was so so hard. Dr. Rosen at Lenox Hill Hospital in New York finally treated my AVM (after 13 years). I was so grateful to find him. I hope that things get better. I just want you to know that you’re not alone. It is really really hard. Don’t give up hope. I used to have a stool in my kitchen so that I could do dishes… every little thing is so much harder when you can’t walk without pain.

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Thank you! I tried using a stool last week (kept my knee on it to keep the foot raised) and was able to bake some cakes! Great tip! :smiley:

Thank you! :heart: