I need to reinvent myself

[How to communicate after a contentious divorce...]

Tough day today. Not very BPD related, sorry for that.

Had to go to hospital today. I managed to get myself downstairs and into a taxi. It was the first time I've been outside for about 5 months. I was grateful for it, it was good being outside even if just for a bit.

At the hospital they had mixed up the appointment somehow so I wasn't in the schedule for today. Fortunately I had brought a print of the confirmation email so they saw it was supposed to be today according to that email. They managed somehow to create space for me so I could see the doctor. I was grateful for that too.

Nice guy this doctor. The not so nice thing was his diagnosis. Yes, I had 2 slipped discs but the reason I was in so much pain and that it is taking so incredibly long for me to heal is that he thinks I have something called CRPS and he said "the prognosis is bad".

I'm not one to immediately believe what a doctor tells me (too much knowledge myself and been fed too much bull's excrement) so I thought "yes... we'll see about that", made the 2 appointments for blocking part of my nervous system as he recommended and got myself home again.

Then I started my own research still thinking the diagnosis was cr*p. Trusted search engine on the tablet and started reading. And it started to make a little sense. And the my eye was drawn to a picture of a hand swollen totally out of proportion.

www.dailymail.co.uk/news/article-2509102/Mystery-syndrome-causes-pain-worse-childbirth-AND-amputation-thats-baffling-docs.html

I recognized it. I've had that same hand, in September 2014. It freaked my GP out and was sent to hospital to see if I had some type of rheumatism. But they couldn't make sense of it. And after a while it passed. I got some kind of inflammation in that arm just afterwards. Very painful. But it passed. I had my lower jaw go slightly out of its socket but got it manipulated back in my a specialized physiotherapist. Done, move on. Then I had my elbow go slightly out of its socket so I couldn't use my arm anymore. Again. Same arm. Meanwhile my leg had started to hurt. Elbow sprang back when I tried to wave away an annoying bug. But leg got worse and worse. Until I couldn't walk anymore and the MRI said slipped discs. But behind it is this CRPS. It fits. I don't want it to. But it does. There is no known cure. It's very painful. Once they've blocked my leg it might come back in my arm. Or somewhere else. They don't know. It could be tomorrow, it could be next week. They don't know. It will never go away, that they do know. At least now I know why I needed so much morphine and why it hardly took away the pain. It does mean I have to reinvent myself. Stress is a factor and needs to be avoided. My job is very fast paced and stressful. So I need to go and do something else. Emigrating to a little farm in the countryside is not a good idea if it can strike any day and leave me unable to take care of myself. I'm not sure if trying to be a potter is a good idea anymore, might be too physically demanding. Need to look into that. Oh, and the doctor wants me to go on some kind of pain medication that is normally used for migraine and epilepsy, and you can't drive while on those so bye bye plan of getting my driving license. Shoot.

I will need to think about my housing situation. A house with no stairs would be better. But getting a house here is near impossible. I was lucky getting the one I have.

I'm used to pain, I already have Hidradenitis Suppurativa (auto immune disease showing in your skin). I've been to hospital every 6 months for 12 years because my cervix showed 'restless cells'. I'm strong, I'll deal with this too. Somehow. But today it sucks and I'm sad and scared and tired. And I don't know yet how to reinvent myself, what I will be able to do and what not... so many questions and things to consider. And of course I'm scared sh*tless the intense pain will return. The feeling of being on fire drove me to desperation.

But to get back on topic, one thing I do know, no more relationships with BPD or NPD guys. The stress would be too much. I can link the start with the hand and the flaring up with my leg to my 2 last PD involvement devaluation stages (not that they caused the disease, that was probably me breaking my knee 2 years ago). The only time I had no pain and no strange things happening to my body was when I was on my high of being in love with the last guy.

I will become my own beloved.

[WoundedBibi]

Tough day today. Not very BPD related, sorry for that.

Had to go to hospital today. I managed to get myself downstairs and into a taxi. It was the first time I've been outside for about 5 months. I was grateful for it, it was good being outside even if just for a bit.

At the hospital they had mixed up the appointment somehow so I wasn't in the schedule for today. Fortunately I had brought a print of the confirmation email so they saw it was supposed to be today according to that email. They managed somehow to create space for me so I could see the doctor. I was grateful for that too.

Nice guy this doctor. The not so nice thing was his diagnosis. Yes, I had 2 slipped discs but the reason I was in so much pain and that it is taking so incredibly long for me to heal is that he thinks I have something called CRPS and he said "the prognosis is bad".

I'm not one to immediately believe what a doctor tells me (too much knowledge myself and been fed too much bull's excrement) so I thought "yes... we'll see about that", made the 2 appointments for blocking part of my nervous system as he recommended and got myself home again.

Then I started my own research still thinking the diagnosis was cr*p. Trusted search engine on the tablet and started reading. And it started to make a little sense. And the my eye was drawn to a picture of a hand swollen totally out of proportion.

www.dailymail.co.uk/news/article-2509102/Mystery-syndrome-causes-pain-worse-childbirth-AND-amputation-thats-baffling-docs.html

I recognized it. I've had that same hand, in September 2014. It freaked my GP out and was sent to hospital to see if I had some type of rheumatism. But they couldn't make sense of it. And after a while it passed. I got some kind of inflammation in that arm just afterwards. Very painful. But it passed. I had my lower jaw go slightly out of its socket but got it manipulated back in my a specialized physiotherapist. Done, move on. Then I had my elbow go slightly out of its socket so I couldn't use my arm anymore. Again. Same arm. Meanwhile my leg had started to hurt. Elbow sprang back when I tried to wave away an annoying bug. But leg got worse and worse. Until I couldn't walk anymore and the MRI said slipped discs. But behind it is this CRPS. It fits. I don't want it to. But it does. There is no known cure. It's very painful. Once they've blocked my leg it might come back in my arm. Or somewhere else. They don't know. It could be tomorrow, it could be next week. They don't know. It will never go away, that they do know. At least now I know why I needed so much morphine and why it hardly took away the pain. It does mean I have to reinvent myself. Stress is a factor and needs to be avoided. My job is very fast paced and stressful. So I need to go and do something else. Emigrating to a little farm in the countryside is not a good idea if it can strike any day and leave me unable to take care of myself. I'm not sure if trying to be a potter is a good idea anymore, might be too physically demanding. Need to look into that. Oh, and the doctor wants me to go on some kind of pain medication that is normally used for migraine and epilepsy, and you can't drive while on those so bye bye plan of getting my driving license. Shoot.

I will need to think about my housing situation. A house with no stairs would be better. But getting a house here is near impossible. I was lucky getting the one I have.

I'm used to pain, I already have Hidradenitis Suppurativa (auto immune disease showing in your skin). I've been to hospital every 6 months for 12 years because my cervix showed 'restless cells'. I'm strong, I'll deal with this too. Somehow. But today it sucks and I'm sad and scared and tired. And I don't know yet how to reinvent myself, what I will be able to do and what not... so many questions and things to consider. And of course I'm scared sh*tless the intense pain will return. The feeling of being on fire drove me to desperation.

But to get back on topic, one thing I do know, no more relationships with BPD or NPD guys. The stress would be too much. I can link the start with the hand and the flaring up with my leg to my 2 last PD involvement devaluation stages (not that they caused the disease, that was probably me breaking my knee 2 years ago). The only time I had no pain and no strange things happening to my body was when I was on my high of being in love with the last guy.

I will become my own beloved.

[heartandwhole]

Hi WoundedBibi,

I'm so sorry to hear about this diagnosis, and that you have been dealing with physical pain in addition to the emotional razing of a breakup. I know I'd feel very scared and anxious if I was told I had CRPS. I hope you will continue to share your feelings with us so that we can support you.  

I had to look up CRPS, as I had never heard of it. I found the NIH (National Institutes of Health, USA) website informative, and it did seem to offer some hope that the condition can be treated and managed. At least they are looking at many different kinds of therapies.

I very much understand the future planning you mention in your post, assuming that things will get worse and that you will be alone to deal with it. That makes a lot of sense, and I would do exactly the same thing (although I tend to immediately go to the future worse case scenario and start acting on preparations, like, yesterday). When I can just stay present with my feelings, though, instead of frantically planning my response, I always feel better, and that panicky feeling usually turns into a calm and peacefulness that helps me deal with what is right in front of me.

I like what you say about reducing stress. That definitely seems to be a contributing factor, as I believe it is in all physical ailments. About 6 month after my breakup with pwBPD (coinciding with the death of my father) my back was an absolute mess, and there was no "reason" for it (I had been fit and healthy before and during the first part of the relationship). Although the pain wasn't debilitating, the discomfort caused other kinds of problems in my body, like branches growing out of a tree trunk. After therapy, gentle yoga, and many life changes, my back feels so much better (although there is some residual tightness and weakness).I was told I needed knee surgery, but I wanted to wait and see. My knee got so much better that I never rescheduled the surgery. I know this is nothing compared to what you have been dealing with, but I wanted to highlight the emotional/mental connection to physical pain.

All this to say that I hope your reinvention will include a lot of TLC for yourself, in the form of self-love and a supportive community of friends/family/partner around you. For today, I hope you know that there are many of us here who care and are here for you, albeit virtually. 

heartandwhole

[steelwork]

Really sorry you have to deal with this.

[WoundedBibi]

Thank you, heartandwhole  

I'm a bit calmer now. I realized I was trying to solve everything in one go. And I can't.

I don't know what life will bring but then again, nobody does.

Yes, it is confusing that the information I found is all so contradictory ("blocking part of the nervous system helps a lot" "blocking part of the nervous system hardly ever helps any" but it makes sense because there is so little known about this illness and the way it progresses is so different for all patients. Yes, a lot of people with CRPS end up in a wheelchair but not everybody. So far I've been lucky; none of my limbs has withered away.

I need to plan less and more at the same time.

Plan less, live in the moment, take it one step at a time. So first get the test block on April 4th, see how my body responds, focus on being able to walk again and being able to sit for a few hours so I can go on my yoga holiday, or take public transportation to see my T, or go to the hairdressers (ohhh... .).

Plan more, in the sense that I need to really think things through. I need to find out more about how my body reacts. Is it 'done' now for a bit with throwing me curve balls? Or is something new around the corner after my back is 'better'? I need to take into consideration it might go horribly wrong on my yoga holiday and I will have to get serious help in getting back home. But at the same time I can't stop this diagnosis from me living my life.

I won't be on these epilepsy pills for ever I presume. I can get my driving license later on. It doesn't have to be now.

I might need to get an apartment on the ground floor but I don't have to find it now.

I would like to be in the countryside but it doesn't have to be a house out in the sticks and it doesn't have to be in another country.

The thing I'm most worried about now is work. I have a telephone appointment with the company doctor the 7th. I need to be careful in how I tell him what so he doesn't immediately think I'm a total write off. Getting a job at another company will be near impossible so I need to stay at this one. But I don't have to stay in my current job. Maybe I can do some kind of reintegration where I have less responsibility and therefore less stress. But I don't need to figure it out on my own, my employer has a part in that too. And so far they have made many mistakes in handling my absence (there are legal requirements over here for how much an employer needs to do to get an employer back to work and I have done all I can since October to be able to work from home for a bit and they haven't done a thing, better yet my laptop has mysteriously been removed from my locker after which it disappeared and nobody know who did this and why) so legally I have a really strong case if they start pushing me. Not that I want to go down that road, but I have a strong case and they know I'm smart and experienced enough to know this.

And I'm afraid of those epilepsy pills. I haven't taken them yet as I need someone to go pick them up and my friends aren't able to till Friday and because I want to be me as much as possible when they put this needle in my spine Monday; the pills can cause anxiety, depression even psychosis and I want to be as calm as I can be.

The warning accompanying these pills "if you are having urges to hurt yourself or suicidal thoughts, please call a doctor" is a scary one.

Any way, I will cross every bridge as I get there.

Thanks for your support  

[troisette]

Oh Bibi, you poor thing. No wonder that you are sad and scared and tired. Anyone would be.

Many years ago, after a botched childbirth I was in spinal agony for three years. Not as bad as what you are describing but bad enough because I was looking after my baby as well. Acute pain cannot be described really can it? You have to live it.

I can understand that your immediate reaction is to reinvent yourself but give yourself some thinking time. Don't make immediate decisions and don't jump. Rather ruminate, familiarise and dwell. Not in an unhealthy way, but exploring all the options. You might find that the light and shade of your situation changes.

For sure our mental state affects our physical state. Even though it's not psychosomatic, it's amazing how our brains affect our bodies. So give lots of thought before you make any decisions and definitely no more PDs.

Heartfelt kind thoughts to you in hard times. 

[C.Stein]

Acute pain cannot be described really can it? You have to live it.

Agreed.  I also have dealt with back issues for three decades.  While most of the time I am "relatively" pain free there have been times when death seemed a viable option to relieve the non-stop pain.  It really can wreck havoc on you emotionally as well having to deal with constant acute pain.

[WoundedBibi]

Oh Bibi, you poor thing. No wonder that you are sad and scared and tired. Anyone would be.

Many years ago, after a botched childbirth I was in spinal agony for three years. Not as bad as what you are describing but bad enough because I was looking after my baby as well. Acute pain cannot be described really can it? You have to live it.

I can understand that your immediate reaction is to reinvent yourself but give yourself some thinking time. Don't make immediate decisions and don't jump. Rather ruminate, familiarise and dwell. Not in an unhealthy way, but exploring all the options. You might find that the light and shade of your situation changes.

For sure our mental state affects our physical state. Even though it's not psychosomatic, it's amazing how our brains affect our bodies. So give lots of thought before you make any decisions and definitely no more PDs.

Heartfelt kind thoughts to you in hard times. 

Thank you troisette 

[WoundedBibi]

Acute pain cannot be described really can it? You have to live it.

There have been times when death seemed a viable option to relieve the non-stop pain.  It really can wreck havoc on you emotionally as well having to deal with constant acute pain.

Very true...

I think though there is a silver lining in all of this. When the pain died down I had more mental and emotional space to think of my ex again and ruminate and miss some aspects of him. "Snifffff... .the way he used to look at me... .I will never find a man like that again... ." kind of thinking.

Well thank heavens if I never find a man like that again. Yes, he made me feel very loved and special at times. But essentially the relationship was all about him and his needs. If my future has CRPS in it I cannot be with a partner who thinks the relationship is all about him. And having this diagnosis has made him fade more into the background; my life is about me and how I deal with this new challenge. I have less room for him now. I'm more focused on me.

[Penelope35]

Hey woundedbibi

 I am sorry to hear about this new challenge of yours. I am not sure if the diagnosis is definite yet but in any case, try to calm down your self about worrying for the future. I can surely understand how a medical diagnosis can bring anxiety especially in the beginning and I would suggest you get a second opinion. If it is confirmed then start educating yourself about it, ways to handle it and everything. But try to look for valid and formal sources because you know how the internet is full of the worst case scenarios.  I can understand how it makes you worry about the future but as with everything, you need to take it step by step. Not everything that's written on the intetnet it's going to happen to you and you don't have to think and plan about everythig at once.

Can you imagine been with your ex during this?  I often thought of how would this man ever be able to stand by me if I needed it?  You are lucky he is not in your lfe right now and I hope you can see that. Surround yourself with people you can lean on. People who love you and on would lift you up and make you laugh when you need it. We are here too 

[WoundedBibi]

Hey woundedbibi

 I am sorry to hear about this new challenge of yours. I am not sure if the diagnosis is definite yet but in any case, try to calm down your self about worrying for the future. I can surely understand how a medical diagnosis can bring anxiety especially in the beginning and I would suggest you get a second opinion. If it is confirmed then start educating yourself about it, ways to handle it and everything. But try to look for valid and formal sources because you know how the internet is full of the worst case scenarios.  I can understand how it makes you worry about the future but as with everything, you need to take it step by step. Not everything that's written on the intetnet it's going to happen to you and you don't have to think and plan about everythig at once.

Can you imagine been with your ex during this?  I often thought of how would this man ever be able to stand by me if I needed it?  You are lucky he is not in your lfe right now and I hope you can see that. Surround yourself with people you can lean on. People who love you and on would lift you up and make you laugh when you need it. We are here too 

Thanks Penelope 

I am thinking about a second opinion, discussed it with my T today too. I'll look into after the injection to my spine on Monday. I've decided not to take the epilepsy pills till after the injection too; I want to be as calm as possible and as those pills can make you feel anxious I will postpone taking them till Tuesday.

I'm a bit hyper aware now, knowing it can pop up in any part of my body. So right now I have my eye on my wrists as they feel slightly swollen. Not panicking though 

The best sources on the internet I think are the really medical ones. So the papers about the subject from real doctors they share with others. And if I read anything else, other patients experiences, I know it could go for me but it doesn't have to be like that for me. The range of outcome is really big.

For now I'm trying to break it down in steps. First the injection and an afternoon with my brother walking me up & down the street as instructed. Then start the pills, talk to my physiotherapist and do exercises with her. Then look into getting a second opinion. Then write down what I want to discuss with the company doctor and how. Focus on being able to walk and sit properly first, so I can fly to Italy and do some gentle yoga in the sun.

My ex wouldn't have been able to be here for me AT ALL. Let me say it loud:

I AM HAPPY MY EX IS NOT IN MY LIFE RIGHT NOW     

I need my limited energy for me, not for solving the mess he always get's himself into, not for trying to make him feel less depressed, not for worrying what he means with his angry one liners, not for worrying about him hitting on other women, not for stressing about him triangulating me and whomever. Not to mention he would not be able to take care of me, or lend a shoulder for me to lean on. His life is always all about him. Besides, me not being able to go out and drink, the only two activities on his agenda, he would resent me for that.

I will need people to lean on. And I will ask you guys the same thing I will ask my friends: if you notice me starting to act strangely or depressed, warn me. It's the side effects of the epilepsy pills that can occur (anxiety, depression, psychosis, self harm, suicidal) and I'm not sure if I will notice a change in me if I'm in the thick of it.

Thanks 

[C.Stein]

The best sources on the internet I think are the really medical ones.

If you haven't already found it, pubmed is a great resource for peer reviewed journal articles in many different disciplines.  Some are free to view some are not.

[WoundedBibi]

  

I just read the paperwork that accompanies my epilepsy pills to help me manage my CRPS/dystrophy. It says these pills are also used to manage BPD  Oh... .the irony   

[once removed]

 

I just read the paperwork that accompanies my epilepsy pills to help me manage my CRPS/dystrophy. It says these pills are also used to manage BPD  Oh... .the irony   

im glad there are some laughs in a lousy situation woundedbibi. i live with chronic pain myself and i know how debilitating and isolating it can be. i really admire your resolve 

[WoundedBibi]

 

I just read the paperwork that accompanies my epilepsy pills to help me manage my CRPS/dystrophy. It says these pills are also used to manage BPD  Oh... .the irony   

im glad there are some laughs in a lousy situation woundedbibi. i live with chronic pain myself and i know how debilitating and isolating it can be. i really admire your resolve 

Thank you onceremoved 

Well, this is so absurd, I wouldn't know how not to laugh about it 

[Penelope35]

Hey woundedbibi

 I am sorry to hear about this new challenge of yours. I am not sure if the diagnosis is definite yet but in any case, try to calm down your self about worrying for the future. I can surely understand how a medical diagnosis can bring anxiety especially in the beginning and I would suggest you get a second opinion. If it is confirmed then start educating yourself about it, ways to handle it and everything. But try to look for valid and formal sources because you know how the internet is full of the worst case scenarios.  I can understand how it makes you worry about the future but as with everything, you need to take it step by step. Not everything that's written on the intetnet it's going to happen to you and you don't have to think and plan about everythig at once.

Can you imagine been with your ex during this?  I often thought of how would this man ever be able to stand by me if I needed it?  You are lucky he is not in your lfe right now and I hope you can see that. Surround yourself with people you can lean on. People who love you and on would lift you up and make you laugh when you need it. We are here too 

Thanks Penelope 

I am thinking about a second opinion, discussed it with my T today too. I'll look into after the injection to my spine on Monday. I've decided not to take the epilepsy pills till after the injection too; I want to be as calm as possible and as those pills can make you feel anxious I will postpone taking them till Tuesday.

I'm a bit hyper aware now, knowing it can pop up in any part of my body. So right now I have my eye on my wrists as they feel slightly swollen. Not panicking though 

The best sources on the internet I think are the really medical ones. So the papers about the subject from real doctors they share with others. And if I read anything else, other patients experiences, I know it could go for me but it doesn't have to be like that for me. The range of outcome is really big.

For now I'm trying to break it down in steps. First the injection and an afternoon with my brother walking me up & down the street as instructed. Then start the pills, talk to my physiotherapist and do exercises with her. Then look into getting a second opinion. Then write down what I want to discuss with the company doctor and how. Focus on being able to walk and sit properly first, so I can fly to Italy and do some gentle yoga in the sun.

My ex wouldn't have been able to be here for me AT ALL. Let me say it loud:

I AM HAPPY MY EX IS NOT IN MY LIFE RIGHT NOW     

I need my limited energy for me, not for solving the mess he always get's himself into, not for trying to make him feel less depressed, not for worrying what he means with his angry one liners, not for worrying about him hitting on other women, not for stressing about him triangulating me and whomever. Not to mention he would not be able to take care of me, or lend a shoulder for me to lean on. His life is always all about him. Besides, me not being able to go out and drink, the only two activities on his agenda, he would resent me for that.

I will need people to lean on. And I will ask you guys the same thing I will ask my friends: if you notice me starting to act strangely or depressed, warn me. It's the side effects of the epilepsy pills that can occur (anxiety, depression, psychosis, self harm, suicidal) and I'm not sure if I will notice a change in me if I'm in the thick of it.

Thanks 

It seems like you have a plan there so that's good! 

Ok we will let you know if we notice anything but yes let people close to you know cause it would be easier for them to observe.

You are strong bibi!