Just trying to stay calm

Support
1

Some days it is so hard just to stay calm and not be overwhelmed. I went to bed last night about 8pm but only dozed until migraine hit. Then it was a struggle to sleep all night _the pain rousing me repeatedly. I got up just before 5am and nearly 3 hours later I am very anxious. When I went to bed last night my skin was sore and burning and I was also hot all night. I woke this morning to see I was bright red. My feet are burning too, but that isn't due so much to EM today. Its a result of athletes foot, gross. The cream I was rubbing onto my feet gently yesterday seems to have made my feet burn more. I know exactly where I picked up the athletes foot. My family all shared the same shower when on holidays and I was the only one who got it. So, I have EM burning and redness,and finding soft enough clothes today is an impossible task - nothing is soft enough. Because of athletes foot infection my feet are burning "extra" and I have a persistant migraine which is also causing nausea although it is not (yet?) so bad that I can't type this on my tablet. I just feel warn out and overwhelmed and highly anxious. Its one of those days when achieving a state of calm is very difficult. Because, I am fearing that at any moment the pain is going to ramp up. It doesnt always do so, but it does it often enough for me to be unsettled and feeling a whole lot of anticipatory anxiety.

I needed to write about it here because it is the only place I feel I can give voice to my fears and be heard. I just needed to offload to people who understand what a struggle all this stuff can be. I'm off, now, to run my feet under cool water and get the cream off and then sit in front of a fan. I will ring and see if the chemist will deliver a spray for my feet as walking down to the shops just seems like an impossible task today. Only the fact that I remind myself that I managed to do so yesterday is keeping me from feeling very depressed. That, and knowing that I have felt this low before and that the feeling of anxiety and depression does pass. Although I must admit I am absolutely sick of the anxiety and depression retuning. I can't work out how, after dealing with this stuff for so long, I am still dealing with the emotional ups and downs. Logic would tell me that I should be used to it by now. But then logic tells me it is absolutely normal to be anxious and depressed about pain.

blue aka Deb

2

Dearest Blue,

I am so sorry that you are having to go through this- bless you!.You are not alone in feeling that some days - most days , its so hard to stay calm . It becomes a vicious circle where anxiety is both symptomatic and causal .Somedays I think if we could just break the cycle - the vicious cycle of pain- anxiety- pain - depression we may be able to manage this damn thing better. Pain is frightening and overwhelming, and its absolutely normal that you are on an emotional roller coaster. Athletes foot is something 'extra' on top of how you are already feeling - be gentle with yourself. Reaching out and expressing your fears is such a positive way off dealing with things. Personally i think you are remarkably strong - inspirational, in fact. Its takes great courage to speak up and out about how we are feeling. Be comforted in the knowledge that we all understand and experience the very struggle you describe, and we are all here for you - always. Also, take comfort in that this moment will pass , things will change and you will feel uplifted again ((((((((Debs))))))).

Biggest comforting hug

God bless

x

3

I am so sorry you are having such a difficult time of it Blue. I am so glad you reached out to us because it is good for your spirit and that is what we are here for. It is hard enough dealing with this on a regular basis and it often brings us to the maximum we can handle when something else is thrown on top of it. Whenever I have anything else added to my daily struggle such as another medical problem or personal life stress it brings on anxieties or depressed mood. I am grateful that these moments are only temporary although I know they will just happen again. At least I know they will go away and I will get another brake if you can call dealing with JUST EM a break! You know what I mean. I learn to appreciate the times when it's JUST EM. I use the word Just lightly.

I hope you are able to get the spray delivered so you can some help with the athletes foot and get one thing off your table anyway. I want to thank you for reaching out to us. It makes me feel good that as a community we can make you and others feel comfortable enough to do so. As Mads mentioned it takes great strength to speak to others how you are really doing. It is all too easy to bottle it up inside even knowing it isn't good for our long term emotional health.

I do hope it gets a little easier for you .

Take care of yourself Blue and I too would like to send you a great big hug :)

4

Dear blue,
I think it is so brave to take to the keypad to express your feelings. I just withdraw and feel miserable and it takes longer I suspect to recover from these episodes which I am sure we all get. You are protecting your family too. I always think that it is bad enough to feel so ghastly without loading the burden on to a bunch of bewildered young people who can’t begin to understand. It must be horribly hot down under which must be adding to your woes.
As mads and Alina have said, we are all in this together and if there was anything we could do to help we would.
Sending you a big group hug and hoping you turn the corner soon.
Nel x

5

Thank you for your responses Mads, Alina and Nel,

The weather cooled down a lot inn sydney last night which helped slthough it feels like its warmimg up again, now. I didnt get much sleep though. Last night I stopped the med that my psychiatrist had given me to help with sleep and anxious thoughts because I suspect it may be partially responsible for my increase in freqency of migraines - they are breaking through despite my pain meds, more and more. Plus I think the meds were making me very snappy and irritable (more so than usual) - I looked up the med and some people do get that as a side effect. And it seems to be making my constipation worse - a common side effect thst I was hoping would eventually wear off, but after being on the med some time (I have lost track of time) I realized that side effect was not going away.

Yesterday I felt really depressed and I was wishing that I did not feel that way. Then I realized (as I have before) that, for me, it is preferrable to feel depressed rather than very strong anxiety. Although I'd rather feel neither, obviously. I believe that the anxiety/excess adrenalin/flight or fight response is VERY much a part of this EM. Indeed, I feel that my body releasing too much adrenalin accompanies my EM - whether too much adrenalin caused by something else triggers em or the em triggers the adrenalin, I don't know? I did note that my skin did not seem to burn as much while I was feeling so depressed.But the anxiety returned this morning while my EM burning and redness felt strong. The return of the anxiety did reinforce how I can deal with depression more easily than I can deal with extreme anxiety. As the morning has moved on I am starting to feel a bit less anxious and the redness and burning dissipate. When I got up this morning my face and neck were very red and burning, as are my feet up to just under the kness (in that long sock pattern). Its dispiriting but not so bad that I feel like I can't bear it. Although it feels like madness that we do have to bear it at all and that it seems the acceptance that msny doctors often display in regards to our pain - that we just have to deal with it - seems to me even more madness.

The pain will hopefully continue to lesson as the day moves on. Usually early evenings are when it starts to flare and it gets worse during the night and each time I waken. Getting up in the morning means a further increase but the sooner I get up and face that the sooner it will start to calm down for the day, usually.

I know that many of you experience similar, and worse. This time of year (festive season) does not help. At least it doesnt help me. All the pressur to be places and do things and the unvoiced assumption of people sround me that my POTS, EM and nigraines will somehow just 'go away' for the duration of this time is irritating and saddening. 'They let it go 'unvoiced' because if they did voice this assumption out loud it would sound as ridiculous as it is. And when they remain 'unvoiced' thry cant be challenged. Rather, it can be denied that they sre making such assumptions at all and the accusation of 'all in my head' can be used against me.

I am not sure how my family get to ignore the impact of my illness on me, while getting to be worn out by the impact it has on them. If you get my meaning. I mention POTS and my daughter can roll her eyes as though its some joke but I sit and listen to her problems with graves disease as im concerned and want to help. Most of all I want to 'hear her' and validate her experiences. Trying to get my daughter or the rest of my family to understand EM would be impossible. Two days ago I had a pretty bad migraine - not as bad as they can get sometimes but bad enough. My mother rang me to ask if she could drop by because she wanted to leave a christmas present here for my grandaughter. I told her I had migraine. But apparently this was not enough to make her reconsider coming. She wanted to do so and really, too bad if I was in pain. Then hubby was playing with my granddaughter on the floor later that day. I was in the kitchen getting some water to drink and the security door buzzer went off. It is in the same room as he was in and when I asked him to answer it he called back to me that I was on my feet therefore I could do it - that it was easier than him standing up to answer it. WTF? I didnt argue and answered the buzzer and then went and opened our apartment door to let the person is. These are little things but they are representative of how my illnesses are just supposed to disappear when they inconvenience others. I have 4 sisters and of thst four I get wonderful support from one of them. Other than that sister and the the support I get here, that is about it. Oh, the support I get from my psychiatrist is also invaluable. My other doctors seem to lack the ability to understand what my days and nights are really like. I wonder if this is because they can't do much about it. And like you said you do Mads, I spend a lot of time roaming the net looking for answers my doctirs have not been able to give me. I look hard for good enough solutions but so far they have eluded me - for 12 years. Indeed, I feel that people think that because I have endured being ill for 12 years it could not be that bad. I am that bad, (knock on wood I dont get worse - although that possibility looms like a monstrous thing in the back of my mind), but there seems there is no appreciation for endurance. Its like they have to minimize it in order to understand how I can bear it and also so they can excuse themselves for not being very supportive at all, in deeds or words. This sounds bitter. It is, when I give voice to my feelings. Thats why I try to focus on the good things in my life. If I think about this too long I feel like crying.

.

6

Dear blue, I just dragged myself from my bed at 2 am. I was sooo tired after an over busy day but flaring feet and legs won’t let me get my sleep. I can’t type much as the nature of the beast means I must keep moving and so carry the iPad and type with one hand only. I understand exactly what you are saying. My family have forgotten completely about EM though I had reams of sympathy for my broken leg! Even my next door neighbour who I see every week to tske her to a supermarket asked, surprised, ‘oh, are you still troubled with that!’ when I explained that my groggy early morning state was due to a night spent on the (kitchen) tiles.

I have to keep reminding myself that our posts are visible to the world when I feel like grumbling about individual family members but I don’t think any one of them appreciates how difficult each and every day has become. The way I am lucky though is that I have only one of them in the house and also that I am so much older than most of you and my life having dwindled to this extent doesn’t seem so catastrophic as it is for you. What a blessing that my husband took off after 40 years of marriage in the nick of time:))

On the subject of constipation I blamed my meds for this but couldn’t work out which since it only became an issue following my accident. I have now been put on a miserable low fat diet and thought with nothing to oil the works constipation would get worse but instead it has greatly improved. Perhaps because I have stopped juicing and instead blast whole fruits and veg in a Nutribullet, thus greatly increasing the amount of fibre I can ingest.

Migraines make me anxious full stop. How can they not though I don’t get blinding headaches like most. My only comfort for anyone else is that I used to have them very frequently and now they are much rarer. I can’t help noticing that mention migraines to the doctor, or asthma or a frozen shoulder and he is reaching for his prescription pad but complain about burning feet or heat rash from my toes to my groin in midwinter or managing on no sleep and there is that blank uncomprending smile and nothing more. No I don’t want sympathy from him, just a spark of interest and a question or two.

I think I am sufficiently frozen now to go back to bed with a hot cocoa and whisky and hope that if I get to sleep I sleep through my baby grandson waking for a bottle.

I shall attach a comical photo of our baby Santa in hopes of making you smile.

Good luck and a caring hug

Nel

Hey, all that typing while walking round and round the kitchen table! Proud of myself.
172-image.jpg (73.2 KB)

7

Baby Santa did make me smile, Nell. Talk about gorgeous.....Thank you for your insight and for sharing your experiences and wisdom with me.

13 years ago I was 46 when erythromelalgia made itself known along with other physical problems. I just turned 59 a week or so ago and its a blessing that I did not know back then how long this would last.

I am thankful that until I was 46 I had a pretty good life healthwise. I still have a good life in terms of kids and grandkids. We are minding my little 2 yesr old granddaughter tonight and although I am tired I feel well enough to do it and that means I will enjoy it.

Nel, as you were writing about walking around barefoot on the kitchen floor typing on your ipad one handed I could see you so clearly. My middle of the night coping mechanism is sitting in a chair with a fan trained on me while elevating my legs on a window sill and sticking my feet out the lounge room window. I appreciate the time you spent answering me. And I hope you did get back to sleep and that your little grandson calling for his bottle did not wake you. Thanks for sharing your life/experiences with me.

I really appreciate it

deb

8

Hi Blue.
As I mentioned before I too have periods of depression or anxiety but my story is different. I almost feel guilty writing it but what am I to do lie? Make up something to try and relate hoping to make you feel better? No… I think you would appreciate truth more.
This disease has taken its toll on me but in different ways. I have nothing but complete support and understanding from my family but I only have my husband with me and everyone else is out of state.
I used to have a few friends that just didn’t get it and thought maybe if I lost some weight it would get better although all of my extra weight is here because I can barely move!! Somehow this friend has turned around and is supportive and understanding too. He became this way after seeing with his own eyes how swollen and red my feet were but surely your loved ones have seen your EM with their own eyes too.
I don’t have the pressures from others to go to events or get togethers. I don’t have anyone just coming over when I already stated I wasn’t well. The holidays don’t change a thing in my life. Other than my husband I am just about alone other than a few phone calls from family and friends. Human contact (other than my husband and doctors) is a rare event. I am confined to my home where I keep it around 58-63year round depending on how sensitive I am. I am fortunate to have a husband that doe so n’t complain about that and would gladly make it colder if it brought any more relief.
My depression and Anxiety tend to cone from being imprisoned in my own home alone a majority of the time because my husband has to work. If it weren’t for my cats I would go truly crazy.
I remember some of what you are feeling from when it first began and no one believed me including my doctors. There was nothing worse than the eye rolling as you mentioned. The ya ya whatever eyes when you are dying inside. If you just had a leg missing or at least a well known condition such as cancer. People would bend over to help you and not only understand when you couldn’t do what was wanted from you but give you sympathy and encouragement.
No… I don’t have those hassles because I am pretty much alone and there is no one to treat me poorly around me. Yes. I have my husband and I am the luckiest woman in the world for it but you know what I mean. No children or grandchildren. Their families.
I am not sure who is more fortunate or unfortunate in situations and luckily this isn’t a contest! I just wanted to talk with you but truthfully not just with I understand completely when I really don’t I do understand a little.
I wish I knew the secret to getting your lived ones to get it because it does make a big difference in sanity . My situation just happened. It helped with my few friends who just didn’t get it when they can see your swollen red body but surely your loved ones have seen this too.
All I can say is I’m sorry. I’m so sorry. It’s hard for me not having advice that can just fix this. I just know although it will come back it will leave too. I like thinking of it in that order. Everyone always says I know it will go away but it also always comes back. Leaving you with the though that it will be back. I like it always comes back but it always leaves too. Leaving you with the thought that the depression and anxiety will be leaving again.
Take care of yourself blue.

9

I am so very glad that you couldn’t see me clearly blue, given what I was wearing/not wearing.



blue said:

Baby Santa did make me smile, Nell. Talk about gorgeous.....Thank you for your insight and for sharing your experiences and wisdom with me.

13 years ago I was 46 when erythromelalgia made itself known along with other physical problems. I just turned 59 a week or so ago and its a blessing that I did not know back then how long this would last.

I am thankful that until I was 46 I had a pretty good life healthwise. I still have a good life in terms of kids and grandkids. We are minding my little 2 yesr old granddaughter tonight and although I am tired I feel well enough to do it and that means I will enjoy it.

Nel, as you were writing about walking around barefoot on the kitchen floor typing on your ipad one handed I could see you so clearly. My middle of the night coping mechanism is sitting in a chair with a fan trained on me while elevating my legs on a window sill and sticking my feet out the lounge room window. I appreciate the time you spent answering me. And I hope you did get back to sleep and that your little grandson calling for his bottle did not wake you. Thanks for sharing your life/experiences with me.

I really appreciate it

deb

10

Hi Alina,

You should never feel the need to lie. You have a great husband by the sound of it. But I'm sure you are pretty great wife in return. I bet you are both kind to each other. However, your life is still extremely difficult and I do understand the anxiety and isolation and can relate to both.

I am pretty isolated, too Alina. I guess I'm not isolated physically because of my kids -- who come and go. And my grandkids, well they take up a lot of a grandparents life, mentally and physically (although I can't do much for them physically I'm a great listener and I have a child's imagination which I call on when my grandkids are around) and I thank God for that. I do miss things thugh, I think the thing I miss most is my sense of humour and my ability enjoy the moment without letting it be shadowed by what may come next. Occasionally I find myself laughing in response to someone or something and I think, 'Oh there I am, that's who I used to be.'

I guess what I want is to climb above all the crap, rise above it, and remember that I can still laugh and feel joy and that I can do it more often if I just let myself. I spend much time in pain (like all of us), but I also spend much time being anxious about what pain I can expect next, and how soon I can expect it. It's such a self defeating way to live. I realize that the pain is going to return, by why do I waste the moments when I have, say, low level pain, worrying about the more intense pain that is going to return? I mean, it's going to happen, why worry about it and spoil what is happening now? I know it's a response to having experienced years of chronic pain. And it's a sane response. But at the same time I can't help but think it's a dysfunctional one, never the less. Or is it really dysfunctional?

At this very moment my mouth, face and feet up to me knees are burning around a level 4. and I have a 3 out of 10 level migraine. These pain levels are not so bad that I couldn't risk being light hearted and find something to laugh about but it's almost like if I let go, relax, and start enjoying myself I will then be punished with more pain. It's as though, now, I feel compelled to keep my guard up because the pain always returns. It's shadow is always with me. A cloud over my head. I feel like it's ready to jump on me at any time. I can't tell when it's going to jump and while it is understandable that I anticipate pain, because it's such a terrible thing, how can I find my way to just letting myself enjoy as much as the moment as I can and let the future (pain) arrive when it arrives? I don't know how to do this anymore. I used to get past things and live. Not live in fear of what was coming. I want to go back to not living in fear of what is about to happen because when I live this way, I'm not changing a thing about pain. I'm just ruining moments I could be enjoying. I need to be aware of my happy times and enlarge them. Not minimize the good times because I don't want to feel too let down when all I can feel is pain. It's like I can't get my hopes up too high because I fear it will hurt more when they are eventually dashed.

I'm having a hard time putting into words exactly what I d,o but I do know I am wasting precious enjoyable moments letting anticipatory fear of pain hover around those good times.

However, there's a catch to this (catch 22). I know that getting excited, a sort of 'upping' of the good adrenalin can lead to a EM flare of over excitement of my pots symptoms. So, I am aware that I need to find a 'calm happiness.' Not an excited one. I pay for excitement with buring and migraine and other things. Is this possible? My body does not distinguish between adrenalin cause by anxiety and adrenalin caused by feeling happy and excited in a good way -- I have experienced that enough to know it's true for me. I think that probably is the problem. The reason that I have dampened down my responses to things. My responses to life. Having realized that good times can lead to pain and other symptoms I try to dull down and minimize everything. My response is not so unusual. I see it mentioned on the POTS forums every now and then. How someone's dysfunctional autonomic nervous system can't distinguish between good happy stress and bad stress.

I have been told I have dysthymia (chronic low grade depression -- interspersed with deep depression) and I know this. I feel that that diagnosis is right. But I also think there is more too it. That I have learned to live a muted life, not getting too excited by anything because excitement, even the of the most joyous kind, can end in pain. My body can't tell the difference between excitement because I am happy and excitement because I am anxious -- to my body it's just all excitement and adrenalin which it tries to shut down. And it shuts it down by giving me pain -- which is a very effective way of stopping the body from doing anything but feeling one thing. Pain. Am I making any sense? I'm trying hard to. But it's such a difficult concept of myself to grasp. I fear letting myself have a too good time because I will pay for it afterwards. What a crappy thought. I'm not brave enough to 'do it anyway (enjoy it anyway) and feel the pain.' As I already feel too much pain as it is, I think.

If anyone can follow my jumbled thoughts and relates to this I would love a response. It's lucky that I have an appointment with my psychiatrist tomorrow (postponed twice already because of pain and nausea) as I want to run this all past him. I just hope I remember when I get there. Often I go in knowing exactly what I want to talk about and then go off on another tangent completely. Which is often okay. But this time I really want to stick to talking about these thoughts and experiences of mine.

I really think that if I could manage to enjoy more without paying for it I would not care very much what other people think or how they act. Because I'd be having as happy a life as I am capable of. It's like I've put the mute button on myself. In self defense and self preservation. But perhaps I've overdone it a bit?

Chronic illness sure is complicated. It's about more than pain. As if pain wasn't enough.

Whoops.... running out of battery time here. So no time to explore some more at the moment. And no time to edit. Which could mean I've written things I may regret. But probably not. I'm glad not to have 'edit time' left. Or I'd probably delete all my musings. And if they are right or wrong, I needed to put them down and 'out there.'

Deb

Hi Blue.
As I mentioned before I too have periods of depression or anxiety but my story is different. I almost feel guilty writing it but what am I to do lie? Make up something to try and relate hoping to make you feel better? No... I think you would appreciate truth more.
This disease has taken its toll on me but in different ways. I have nothing but complete support and understanding from my family but I only have my husband with me and everyone else is out of state.
I used to have a few friends that just didn't get it and thought maybe if I lost some weight it would get better although all of my extra weight is here because I can barely move!! Somehow this friend has turned around and is supportive and understanding too. He became this way after seeing with his own eyes how swollen and red my feet were but surely your loved ones have seen your EM with their own eyes too.
I don't have the pressures from others to go to events or get togethers. I don't have anyone just coming over when I already stated I wasn't well. The holidays don't change a thing in my life. Other than my husband I am just about alone other than a few phone calls from family and friends. Human contact (other than my husband and doctors) is a rare event. I am confined to my home where I keep it around 58-63year round depending on how sensitive I am. I am fortunate to have a husband that doe so n't complain about that and would gladly make it colder if it brought any more relief.
My depression and Anxiety tend to cone from being imprisoned in my own home alone a majority of the time because my husband has to work. If it weren't for my cats I would go truly crazy.
I remember some of what you are feeling from when it first began and no one believed me including my doctors. There was nothing worse than the eye rolling as you mentioned. The ya ya whatever eyes when you are dying inside. If you just had a leg missing or at least a well known condition such as cancer. People would bend over to help you and not only understand when you couldn't do what was wanted from you but give you sympathy and encouragement.
No... I don't have those hassles because I am pretty much alone and there is no one to treat me poorly around me. Yes. I have my husband and I am the luckiest woman in the world for it but you know what I mean. No children or grandchildren. Their families.
I am not sure who is more fortunate or unfortunate in situations and luckily this isn't a contest! I just wanted to talk with you but truthfully not just with I understand completely when I really don't I do understand a little.
I wish I knew the secret to getting your lived ones to get it because it does make a big difference in sanity . My situation just happened. It helped with my few friends who just didn't get it when they can see your swollen red body but surely your loved ones have seen this too.
All I can say is I'm sorry. I'm so sorry. It's hard for me not having advice that can just fix this. I just know although it will come back it will leave too. I like thinking of it in that order. Everyone always says I know it will go away but it also always comes back. Leaving you with the though that it will be back. I like it always comes back but it always leaves too. Leaving you with the thought that the depression and anxiety will be leaving again.
Take care of yourself blue.
11

Ha! I'm in pjs turned inside out because the outside is softer. So is my old t-shirt. And the summer weight cotton dressing gown that used to be my husband's has holes and and is fraying badly. Probably only another week left in it. And I do answer the door like this. Why so many clothes on at this moment? Because daughter and her husband are expected at any time. And I don't want to freak son in law out by being half naked.

deb

I am so very glad that you couldn't see me clearly blue, given what I was wearing/not wearing.



blue said:

Baby Santa did make me smile, Nell. Talk about gorgeous.....Thank you for your insight and for sharing your experiences and wisdom with me.

13 years ago I was 46 when erythromelalgia made itself known along with other physical problems. I just turned 59 a week or so ago and its a blessing that I did not know back then how long this would last.

I am thankful that until I was 46 I had a pretty good life healthwise. I still have a good life in terms of kids and grandkids. We are minding my little 2 yesr old granddaughter tonight and although I am tired I feel well enough to do it and that means I will enjoy it.

Nel, as you were writing about walking around barefoot on the kitchen floor typing on your ipad one handed I could see you so clearly. My middle of the night coping mechanism is sitting in a chair with a fan trained on me while elevating my legs on a window sill and sticking my feet out the lounge room window. I appreciate the time you spent answering me. And I hope you did get back to sleep and that your little grandson calling for his bottle did not wake you. Thanks for sharing your life/experiences with me.

I really appreciate it

deb

12

Hi Blue. Just checking in on how your appointment went.

I think you explained your thoughts perfectly. I’m glad you can still see that there are still good things in life even if you can’t always let yourself truly enjoy those times. The fact you can recognize they exist is huge. Many can’t even see them which is the first step.

I find appreciating the minutes or hopefully hours when things are not that bad or even good takes a certain amount of effort and when this is practiced like learning a language it eventually becomes second nature. You will still have all of the pain and difficulties but there will be these little breaks of peace

And joy that are needed to get you through the next round.

I totally get it when you talk about the consequences of good stress or excitement. We definitely have to lead a muted life. You can v experience joy but excitement or laughing too much has very painful consequences. Thus too is something that takes practice.

I remember talking to my father and starting to cry. As I did I could feel the burning starting. I stopped my self from crying for a moment which brought up the thought that i cant even cry then as, I was telling my father I started Bawling thus time saying I c ant even cry! I can’t laugh I can’t be excited! Crying and burning some more. I tell him how I have always been such an emotional and it shows kind of person . Emotional all ways not just emotional sad …emotional excited and happy. I could never be a poker player. Any way I don’t even remember what made me so sad that day that started me crying in the first place. I just remember my crying because I couldn’t cry without adding to my pain. 8 like video games and sometimes if it’s too exciting these make me burn too and I have to stop

I’m glad you are seeming someone Blue. We don’t only have to take care of our bodies through this is our minds that need the most taking care of. I have always been … not a control freak like in a bad way just someone who likes to be of control of herself not others if that makes since.

any way with this condition all of a sudden I have almost no control of anything. It’s been about 5 years for me and in this time I have learned to control my emotions most of the time. Not stop feeling but rope them in a bit. I am happy but not adrenaline filled excited. I am worried about something but not adrenaline filled nervous. I try limit my crying and this is still a work in progress with success happening more and more. In all situations I think closing my eyes and deep breaths are what works for me. Just letting it all go quickly followed by a distraction such as a book or phoning a friend …quickly before it can come back.

Ok …now my hands hurt too much to go on and I can always talk more. Alas I have come to one of the things I can’t control a

ND must go before the pain gets enough I am forced to use my breathing.

I do hope you are feeling a little better Blue.

13

Thanks Alina, I hope your fingers did not hurt too much. You have mirrored back to me a lot of what I've been thinking. I can relate to your experiences and the control of emotional responses. We do have to live a muted life but I guess that does not mean a joyless life. I used to be very emotive but have had to rein my responses in. At times it feels so confining - to confine my body and then my emotions seems too much to have to bear, but there are other ways to see things. If I want happy I dont get to act like the old me. But that doesnt mean I cant be happy. Just that I needto act and respond differently, I guess.

blue