topic I'm not managing so well anymore in Long-term support over the journey

I'm not managing so well anymore

Wednesday — Wed, 28 Sep 2016 04:20:28 GMT

I am finding it harder and harder. I’m told I’m positive and resilient and maybe I have been. I’ve managed with the help of AD’s to get through. Now I am so ill I can hardly get out of bed. I spend too much time in hospitals and around doctors. Yesterday I saw a public hospital doctor that seemed to take delight in making me feel like a nuisance. He smiled and made smart jokes with his junior doctor at my expense. He didn’t listen he was so horrible and rude. Too many health issues, too many medications and too many doctors.

I have such a little quality of life. While not suicidal now, I am incredibly sad and can’t see a way out of this. The medications I take for auto immune disease have destroyed and made unrecoverable my immune system. I knew this when I agreed to take them, but I didn’t realise that it would mean I would always have some sort of infection, like last week’s pneumonia. Of course antibiotics are no longer useful and I can’t develop any new immunity. A trip to a coffee shop can send me back to hospital.

My friends and children are lovely but dispersed and not close by. I don’t say a lot because well it’s bloody boring and I’m sure it is more than they all need to know about. There is nothing anyone can do. They try with their suggestions of a new exercise or superfood, this dosen't help. They don't listen, it's too complicated so I don't bother explaining. I get comments like oh yes xx had pneumonia and they are really well now. that's great for xx. Or if you follow this exercise routine your blah will get better. If only I could get to the gym I would be there twice a week. Or take magnesium etc, yep I know all this. I know they are flailing around and trying to help but it feels like they are out of their depth and just saying things that aren't helpful. I don't stop them or try to explain anymore. Over the phone they can't see me so its easy.

My partner is away and to self involved when he is here to understand what I am going through.

I’ve been so independent all of my life from when I was a child. I don’t know how to manage this, how do I get a life? I’ve tried joining classes but I end up getting ill and not being able to attend. Maybe this really is as good as it gets and all the doctors and medicines in the world are not going to make me well.

I guess that is the outcome that I need to come to terms with. I've always believed in quality over quantity.

I’m sorry, I just needed to get this out.

I'm not managing so well anymore

james1 — Wed, 28 Sep 2016 05:42:00 GMT

Hey Ava,

Sorry I don't really have any suggestions as I have no experience with physical health issues.

I think we inevitably find that, whatever chronic illness we have, our life will change in some way. For some people, their lives are not so affected but for others, it is. I honestly don't know which one it will be for you, and it sounds like nobody really knows.

Equally, I think the mindset of quality of quantity is the right one. I look at it as: I can only do the best that my health allows me. Yes, it's limiting my ability to do certain things, but there's still plenty I can do.

I think acceptance can take a while, but with acceptance comes a renewed sense of satisfaction in other aspects of your life.

So the only advice I have, and I realise you may be doing this already, is to do the things you can do which give you pleasure. For me, even in very severe depression, I could find some solitude if not pleasure in classical music. Just really listening for each instrument, each crescendo and decrescendo, trills and instruments echoing other instruments... just finding a deeper and more meaningful enjoyment in simple things that I could do in my bed. When you have chaos in your world, just a bit of peaceful focus can be really nice.

James

I'm not managing so well anymore

radiojammer — Wed, 28 Sep 2016 07:37:32 GMT

Hi Ava

Youve been great with replying to my posts so I just wanted to let you know that Im thinking of you and am sorry to hear youre feeling so down. I wish there was something I could do for you even if it was just to give you a big hug and spend a little time with you. I too cant offer you any advice other than to hope youre feeling better soon and to sympathize about your horrible experience with that doctor. Really he sounds most unprofessional and is probably not in the right job if he treats a patient so inconsiderately.

Even though this probably wont help you I want to let you know that youre not alone in your sadness as I too am suffering in this way and feel like i dont have much of a quality life either. I guess all we can do is to battle through each day and hope things improve. James' advice about doing things that give you pleasure is good, even if you do such things for only a short time. Reading, listening to music, crosswords, going for walks and watching tv or dvds are just a few ideas. Have you got anyone empathetic you can talk to? I find talking to someone really helps if there is someone who'll listen. Maybe you could skype the most empathetic of your friends seeing theyre not close by. At least you have friends, i only have one good friend now. Three of my best friends have just given me up and wont communicate at all which is one of the main reasons I am down and i have no way of making any real friends at all with my isolating job.

Have you got a good psychologist you can talk to?

Theres not much more I can say but I hope things improve for you soon. Take care and a big hug going your way.

Sue

I'm not managing so well anymore

blondguy — Wed, 28 Sep 2016 08:42:46 GMT

Hey Wednesday

You have nothing to apologise for. You have entrusted us with exactly how you feel. That is a compliment. You have been on the forums for a long time now. When I was in crisis I had to see a council appointed mental health worker who insisted that I see him weekly for a minimum for six months...I thought...oh no....but did it anyway..it worked.

I know you have really chronic physical pain which I have no idea about. I do know that any mental health problems can be exacerbated by any ongoing physical pain.

If I may ask you......how often do you see a counselor or even a GP?. I do feel for you with what happened at the hospital. I would have felt awful. That type of mentality you dont need to find your way to some peace.

(Hugh Hugs), Paul xx

I'm not managing so well anymore

Wednesday — Thu, 29 Sep 2016 03:11:18 GMT

Hello dear James,

Are your pictures drawn by you? If so you are one very talented person! James your classical music trick is a good one, there is a lot of the classics played in this house. I'm having a Dvorak's song to the moon moment.

Thank you for replying to my post. I was diagnosed with major depressive illness decades ago and have managed it to the best of my ability. The medication I take now although outrageously high seems to do the trick most of the time, with some doona time now and then. The best part is that I can now tell myself that it wont last and I just need to live through the icky time.

The physical health issues have narrowed my life to only an existence. The joy and peace I took in messing around in my garden for example is only a memory. As are the other things that brought me joy. Watching my deterioration and listening to the next doctors diagnosis is just getting to me. This is not something I can overcome by sheer will power, it's hard for me to take onboard. I guess I haven't got to acceptance on this one.

I try to keep it together and not waste time feeling sorry for myself. I've always been a gallery person. It took me three months to organise a trip. I didn't see the entire exhibition instead I ended up in the back of an ambulance, more medications and more time in hospital.

Hugs, x

I'm not managing so well anymore

Wednesday — Thu, 29 Sep 2016 03:25:01 GMT

Hi Sue,

How lovely of you to respond to my post, thank you. I'll take the hug, thank you.

The doctor was about the last thing I needed. He hadn't read my file. i know that specialist are in a heaven of their own and also know better than to argue. This doctor really shocked me. I had a mastectomy a few years ago. He ran through my medical history briefly and said you didn't have a mastectomy. How do you answer that? I said I had and he argued back, it wasn't properly documented in his notes but it happened and I have the scars to prove it! I tend to back of in aggressive situations, I take flight rather than fight. The experience just continued to get worse, the junior doctor in the room just kept a straight face. At the same time this doctor is telling me I have another chronic illness to add to the list. I was overwhelmed and to some extent closed down and probably missed some of the info I needed.

As for talking as you know you cant push people too hard. I've always been the listener and I don't think I explain myself well. Everyone I know has their set of problems, you just have to scratch the surface.

I've said more on this forum than probably in my entire life. I've been very lucky to have found such lovely supportive people here.

I hope you are doing a little better.

hugs, x

I'm not managing so well anymore

Wednesday — Thu, 29 Sep 2016 03:45:19 GMT

Hi there Paul,

As always you are such a sweetheart, thank you so much for your post. I'm sorry you have had such a tough time of late. It would be so lovely if we could give those hugs in person. Lots of hugs to you and I am pleased that your mental health chats have been helpful.

I feel like I see my doctor very often, probably somewhere around 4-5 times a month. Mostly it's trying to make some sense of the non-ending increasing in severity infections and AA disease escalations and implications. I also see a range of specialists. When the last set of meds failed (I seem to be medication resistant a complication of my system closing down) my specialist looked devastated, I thought I should race around the table and giver her a hug.

As for a psych, I haven't seen one for a while. I've lost some confidence in the system, for me that is. I know how well it works for others. I can always try again. Pysch's seem more interested in my past that my current. As I have explained to them I can't resolve my past nor do I want to waste time on it. I guess that means I have some acceptance in that area.

Take care, hugs, x

I'm not managing so well anymore

james1 — Thu, 29 Sep 2016 04:12:28 GMT

Oh that can be so disheartening to plan for a trip only for it to go wrong.

I sometimes think of where I am and how lucky I am to not have any physical health issues, because I honestly cannot imagine what it'd be like to have my body fail me when I wanted to do something.

Do you know any others who also have auto immune issues who you could share stories with? I would imagine that, between your doctors and past counsellors, they would know of some sort of support group?

I know it's only a poor imitation of the gardening and galleries that you enjoy, but as you try to learn how to cope with the deterioration of your auto immune system, perhaps you could explore your interest in gardening and galleries in some other way? Learning the histories of some of the worlds famous gardens and horticulturalists and groundkeepers, and perhaps dipping into a bit of art as well. Similar to music, these are all ways to keep your mind engaged with something that interests you, without having to spend time in the hospital. Of course, you can still plan visits to the galleries but this gives you something in the waits between.

Sorry, I hope you don't mind the suggestions. Sometimes I don't want suggestions and just want to be listened to. So I just want to assure you that I'm listening.

James

I'm not managing so well anymore

Wednesday — Thu, 29 Sep 2016 08:13:46 GMT

Thank you James. I'll do the best I can. I think I've figured out it is about accepting the things I cannot change!

Hugs, x

I'm not managing so well anymore

Lost_Girl — Thu, 29 Sep 2016 08:51:03 GMT

Hi Ava,

I am so sorry to hear you feel this way but not surprised given your current health. Gentle hugs from me.

Perhaps also consider the changes you could make but are not to ehat you are used to. Perhaps a single apartment close to friends or family may make you feel happier. Family and friends to help when you are at your worst and who can drive you to galleries in quieter areas when you are well. Perhaps you can get some art dvds or even courses you can paint yourself? Perhaps some art or garden magazines?

Kind thoughts and love xx

Ps. No access on hols, night out tonight, but home on Sun. Miss you

I'm not managing so well anymore

Wednesday — Fri, 30 Sep 2016 01:54:43 GMT

Hello lovely,

Please don't worry about me. I hope you are all having a fabulous holiday. I bet your babies are over the moon seeing the animals close up. I can see you smiling as you watch them have fun. It is probably a good thing for you to have a mental break from the forum too.

It's nice to be missed! Yes lots of thinking to be done still. My brain is just to tired at the moment but I'll get there.

Love and hugs, xx

I'm not managing so well anymore

Clues_Of_Blue — Fri, 30 Sep 2016 04:54:02 GMT

Hey Wednesday,

We've crossed paths around the threads and I got the impression you had a bit going on with your health, but I didn't know your story until now. I can well understand your frustration and sadness. Especially when they don't understand or there isn't anything specific they can do, friends and family can really get it wrong sometimes in the ways they offer support. Whilst my problems are different, they're not really things someone else can fix, and I get a lot of shrugs or avoidance or "have you tried X really obvious thing that of course I've bloody tried?". And the worst of all, "think positive". Ugh! It feels like being brushed off or that they're just not hearing you at all, and that really sucks.

I don't have a huge amount of experience with physical health problems myself, though I am gaining an understanding as my partner has a serious heart condition that limits a lot of what he can do, physically. His attitude toward it is amazing, and he makes the most of what he can do with the limitations placed on him, but like you sometimes he just gets so frustrated and down. I don't try to make suggestions, it doesn't help, I just listen and try to understand, and it's clear that's what you need, too. That said, are you able to connect with others in your situation? A support group or something? They might have more useful ideas and know of better doctors that won't treat you like that jerk did, so at least you won't have that sort of behaviour to add to your list of troubles. I'm sorry you went through that, it's not right.

I've seen you give a lot of good advice and care on the forums, which I appreciate on behalf of those you support, and I hope just by listening I can help you out a little.

Blue.

I'm not managing so well anymore

Wednesday — Fri, 30 Sep 2016 08:35:09 GMT

Hello Blue,

Thank you so much for your post and your generous words. The BB forum has kept me going so it works both ways. You're right sometimes it is just having someone to listen that helps. So, thank you for listening. I hope your husband is receiving great care with his heart problem and that there is light close by at for you both.

I find groups incredibly difficult I am way to high on the introvert scale to manage. I tend to go into a facade mode and listen a lot, it is easier for me. I have a regular infusion, which is a day in hospital and the chat around the ward at that time is so sad. I usually come away thinking my life isn't to bad after all. I listened to everyone else's stories and everyone seems so much worse off than me. But of course I am receiving the same or higher level meds. It's just one of those reality check times, my body is not coping and has switched of my autoimmune system. It can't manage the range of medications I use to keep going. I have tried for years to keep it all together. I hate feeling like any kind of burden. I've always been such and independent woman.

It has dawned on me that I am gaining speed and my medical issues are increasing rapidly with no detours inside. I'm not sure how much quality there is in an exhausted life that is mostly sleeping.

Hugs to your and your husband. x

I'm not managing so well anymore

blondguy — Fri, 30 Sep 2016 11:21:50 GMT

Hi Wednesday

Thanks big time for replying 🙂

James, Bluguru and Carol are legends on the forums that I have learnt a lot from since they been 'on the air'

It really makes me feel mega grateful that they are here

That council appointed mental health worker that gave me my life back was a young psychiatric nurse.......he was a gem. I dont where he is now. I wish I did.

Here for you Wednesday and thankyou for the hugs....they are gift to me. I hope you find some peace on here xoo, Paul

I'm not managing so well anymore

BballJ — Fri, 30 Sep 2016 15:33:01 GMT

Hi Ava,

I just caught this post before i was about to log out and try and get some sleep, I had no idea you were dealing with something as detailed as you explained above. You know i am always here to talk so of course just wanted to remind you of that as you have been such a help for me personally.

My best as always for you.

Jay

I'm not managing so well anymore

Wednesday — Sun, 02 Oct 2016 01:16:34 GMT

Thanks Paul,

I do feel blessed to have such lovely on air pals, they are all gems.

Hugs.

I'm not managing so well anymore

Wednesday — Sun, 02 Oct 2016 01:30:37 GMT

Hi Jay,

Thanks! I've enjoyed our chats.

I think the illness stuff is what brought all P's GAD stuff to ahead, I just ran out of steam (literally, haha). It's been good to see it from his side with your help.

P will be back in a couple of days, so I'll try to find a spot for the pharmacy I have on the kitchen bench and put the house back together in between naps. There will however be no windows opened until the pollen and wind gods start behaving!

Being alone in the house I can sleep a lot so it's not too bad. Maybe when the spring hay fever season drops off things will be easier for me, who knows. I just sound breathless and squeaky now and less like Darth Vader, which is a considerable improvement!

Thank goodness for AD's!

Okay you wind and pollen gods, give me a break.

Hugs, I left note on your thread...

I'm not managing so well anymore

Lost_Girl — Sun, 02 Oct 2016 10:39:11 GMT

Dear Ava,

When I was at my lowest and all I did was sleep and watch tv and log in here on occassion I wondered too of the quality. I would text my busy friends with their busy lives and then after a while I stopped because I felt so jealous of what they were able to do with lives moving forward when mine was not. I got a great sense of satisfaction being part of this forum. If I could just make one person's life a little better or save someone from feeling lonely or give a oerson hope then that is more quality of life for me then I will ever find pushing paper for the corporate machine.

Ava, the support you provide here is quality. You are wanted and needed and indeed loved here. I hope you realise how much you offer others. I wish I could offer you more.

You were right about me standing back and watching my children. It is still amazing to me to feel such love at their enjoyment of experiences.

Thinking of you tonight lovely xx

I'm not managing so well anymore

hayde_1694 — Sun, 02 Oct 2016 12:49:56 GMT

Hello wednesday i know how feel i used to be there myself i worked at my anxiety and i took control stay positive you will make it through it what i said before was not ment in a rude way stay strong i would like to stay in touch

I'm not managing so well anymore

BballJ — Sun, 02 Oct 2016 13:04:09 GMT

Hi Ava,

Anytime someone suffering from GAD like P and myself, it plays a major impact role on our spouses like yourself, Im glad you have managed to rest up whilst P was away, that is always a good thing and not sounding like darth vadar anymore (hehe) but still i am also sure you cannot wait to see him just for a big hug. I get hayfever as well so i am with you on these damn pollen winds, today was rough for that.

Do you find the AD's are a major help for you?

My best as usual 🙂

Jay