Not Sure where to Turn

[amexdm]

Hello folks:

I am seem to be headed down a dead end road. I am working 36 hours a week and not getting any better. I took a 4 day weekend and thought that would help. I felt ok while I was off but yesterday back at work was not a good one. At 4:53 pm (I get off at 5) the world overcame me and I started to cry and realize that I may never get better. Fortunately it was the end of the day. I cried on the drive home and could barely see the road. I got home and my wife was great with me.

But I'm not sure where to turn next. Today I feel 40% but came to work anyway. Reducing my hourss is not an option at this time. I will probably give it til September. At that point I guess I will have to check in to disability. I may or may not qualify. I have had a headache for 294 straight days. My legs are weak and my feet hurt terribly. I am pain 24 hours a day. The only time I feel "normal" is when I take a pain pill. I only take them when needed and feel gulity and usually suffer until 6pm. I am existing, not living. I know I should be grateful to be alive but then what kind of life is this?

Not sure a psychologist would help. Already on anti-d. Psychologist would tell me I'm sick. I know I'm sick. I know I've suffered loss. I accept it. I know I may not get better. I accept it. Just not sure I wanna live it.

I know you guys will understand. Thanks.

David

[Macca]

David,

I feel for you right now. I made a reply on another thread this morning - I can't remember which one now but I've just been off for five weeks and I go back to work next Monday and I'm dreading it. They'll all think I'm ok and when I tell them I'm not they'll be sympathetic in words but their faces will tell a different story. They'll be etched in disbelief and think I'm kidding. I'm not getting better yet I can't stay off for another ten weeks until my next tests are done. I cried last night when the enormity of what the doctor had done in signing me to go back to work had done. My head isn't ready for it yet and the outside world is an unforgiving place.

I am in a vulnerable place also and I can cry at things I wouldn't have batted an eyelid at in years gone by. Is it ok to cry if you're a man? It is now and I don't really care who knows it. I've cried many times in private. But then who knows the problem if we can't let it out and share it. My partner is great also. You need to talk to someone and get it out of your system - this is the only place I know where the understanding is there - I mean really there, because we have a shared experience. Is your doctor sympathetic? Is there something they may have mmissed in assessing your case? is there something different you think you may have mentioned but never really did? perhaps it's worth going over your case again looking for the missing clue however small it may seem, Columbo style!! Write things down and re-examine it when you think you have finished and I bet you'll think of something else! Perhaps you need to talk to your doctor about pain management, being proactive rather than reactive, so that pain managemet drugs are already in your body ready to fight the pain as it arrives rather than waiting for it to be here and then waiting dfor the drugs to kick in. Does that sound sensible? I'm not a doctor so only do it on medical advice not mine - it was just a thought.

Keep your chin up David, I'm thinking about you and wishing you well. You are the same automobile - you just have a different engine at the moment and so performance will be different as well. Problem is your battery isn't big enough just now so you have to keep re-charging more often!

Stay well David

regards

Macca

Edited May 24, 2012 by Macca

[Winb143]

David Hi,

I am at a loss...you put on a good front... but no need to as .Men are allowed to cry it isn't a sin....I can understand how you feel if you are

in pain all the time...I just don't know how to help you xx...that makes me feel sad as you have brightened up many of my down

days... ..Get to Docs...tell him what you said to us....and ask him to listen to you.....Life is good, ..and so are you so get help xx

Thats an order xx

Keep Chin up xx xx

Luv ya Pal

WinB143 xx xx

[Gill C]

I think you need to be as honest with your GP as you have been with us. No GP in their right mind would sign you off as fit to work if you told him what you have just written. Physically you may be ready for work but mentally there is obviously a long way to go & that is the most important thing. SL recc's reading a letter from your brain & I think you need to refresh your memory with it to understand how much healing there is still to do mentally.

I am almost 2 years post clipping & don't feel ready to work, I could maybe do 2-3 hours of reasonable work but nothing more & the more complicated & noisy the work is the less time I could be useful for.

I really feel for you but if you read Sandi K's return to work thread you can see how detrimental it is to go back to work so soon & she thought she was ready! Its clear you need to tell your GP much more of how you are feeling, there is no weakness in it & he/she won't think any worse of you. Its time to 'talk' & not to be the 'strong silent ' type.

Good luck & I hope you can push back your start date for work. Take care David xxx

[lisac]

Hi David, I'm so sorry to hear you're going through a rough time. I agree with Macca... maybe see your doctor, explain how you feel and come up with a pain management plan. It sounds like the pain is large part of your problem. If you can get that under control, I bet you'll feel better physically and mentally. There's no reason you should be suffering every day when there are things that can be done. Has anyone been able to explain the cause of the weak legs and foot pain? Is it neurological? Would physical therapy help? Maybe an EMG test to see if there if the nerves are responding correctly. I'm actually trying acupuncture to help with my frozen shoulders. I've only had one session, but my shoulders definitely have more range of motion. Gotta think outside the box.

Anyway, I hope you feel better soon. Take care.

Lisa

[Macca]

David,

having just read what some of the others have written, I think crying and getting your true feelings out, not bottling them all in is actually a sign of strength, not weakness and Sandi's thread on going back to work has some great stuff on it - well worth a read. If that's not enough come back to me and I'll see if I can help some more - the only daft question is the one you don't ask! What touches one touches all. Good luck David

On the Winb front, and joking apart, Smokey Robinson's 'Tears of a Clown' seems appropriate right now - I know you are hurting and we are hurting with you - keep in touch, we're right here and right with you!!

Am I getting to sound like Dr Phil?

Macca

Edited May 24, 2012 by Macca

[MaryB]

David, I so feel for you. I understand and wish there were easy answers. Somethings I have learned and it is not a positive but keeps me sain is that when I am having good days to stop thinking I am cured. I have done that for over 15 years and now with the SAH I won't allow myself to go down that road of disapointment again when I crash. YOU need to see your GP and do it now. You need change your medication possibly, that is common. I have not worked at all yet this week and it is so nice to take my 3 hour nap. I just now was able to do some personal phone calls etc that I havent done in years, lucky they werent home! It is so hard to fight the fight but you must do what you can. We all love and care about you so please jsut call your dr today and tell the nurse why you need an appt. Be honest with yourself and others. I have no problem doing so and it makes me feel better saying "I can't do that right now". People are sick of hearing me say that but we all know where we are at. I carry the %^$(&%#^ing insurance in our family and I feel trapped by it but for now I just am honest and put one foot in front of another everyday....tomorrow may be better..... GIANT BEAR HUG! maryb

Edited May 24, 2012 by MaryB

[Sandi K]

David I am so sorry you are feeling this way. Its an awful feeling when you can't see the light at the end of the tunnel. A headache for almost a year straight would drive anyone nuts. The pain from fatigue isn't understood by anyone whose never felt it. The tears are about the only thing that makes sense. Tears of pain, frustration, and sorrow. We get to a point where we are so exhausted that the only expression we have left is tears.

What is keeping you at work. I'm assuming you have used up your sick leve and beneifits and risk losing or will have to give up your job if you request time off? Can you afford to take a month off? You have shown incredible strength and determination and loyalty to your job by ramping up so quickly. I have stood by reading your posts in awe of your persistence. Despite all odds you have pushed through. I've thought to myself many times 'why can't I be more like David?'. If you can afford a month off now you could remind your employer of the initiative and dedication you have shown and explain that you are exhausted and need time away to recover further. Is it an option?

At your return you could then assess where to go from there. Right now you are so exhausted I'm betting that you aren't thinking straight. I sure wasn't back in March when I was overwhelmed with fatigue and could barely put one foot in front of the other. The one thing you need is rest.

I wish I could send you some spoons.

Sandi K. Xoxoxo

[goldfish.girl]

Hi David,

I sent you a pm when I read your post earlier as I didn't know what to say to help you but wanted to show you a bit of support. As always, others on here have found the words I was looking for.

We are all behind you & I'm sure we all feel equally gutted to hear how bad you feel just now.

Get well soon David (or at least more well than you are right now)

Love & good wishes,

Michelle xx

[SarahLou]

My dear David...

We've been emailing but I just want to add... Yes, do read 'a letter from your brain', and then read it again.

It's ok to cry, rant, rave etc. As I've said, I'd be more worried if you didn't.

Grieve for what you once had but also celebrate what you do have and what is yet to come.

You will get there, your'll find your way back on track.

It's nearly 2 yrs since my world got rocked and I think I'll always have these roller coaster of emotions to ride through.

As for 'not sure where to turn'... Turn to us.

24-7 bud.

Take care, big hugs to you.

Your Lulu Belle Xx

[winter]

Oh David! I sooo feel for you. And glad you shared your feelings here, too

We do get it and care about you and hate that you're feeling so down and in pain!

As the others have said, please talk to your primary doc or neurologist. When I went back to work(and it was too soon really) I has a constant headache. I continued on...the neuro put me on amitriptyline. It helped some but not much to make a difference

In Feb I started taking depakote. It has made a HUGE difference for me. Unfortunately I'm not working- but I think that too, has helped keep the headaches at bay.

I understand that "not working" may seem like an impossibility financially

You might want to talk to a lawyer or disability advocate. They can help determine if it would be plausable to start the process now. It takes a good deal of time and is one of those areas you might want to think about.

When you're in the middle of that dark tunnel it's hard to see the light - I know, just getting toward the end of that tunnel myself. The light is there- just hard to see right now hon.

I'm keeping you in my thoughts for strength and peace. Sending lots of good energy and hugs your way,

Carolyn

[rprice38]

Hi David.

Just wanted to say that the fact you have managed to go back to work is an indication of your strength. I'm not sure what job you do, but is there a chance of altering your duties or hours in some way? I went back too soon and got sent home so now I just do 3 half days. We miss my salary but health comes first. Is there an occupational health specialist you could talk to - the doctor I saw was very good at judging what I could manage.

There is always light at the end of the tunnel, it is sometimes harder to see! Please post again tomorrow to let us know how you are feeling.

Take care

Rhiannon xx

[DawnS]

Hi David,

I am not sure that I can add anything that everyone else has not already said. I was wondering though, has your doctor looked into other reasons for the headaches? It might seem that the sah is the obvious root, but could it possibly be something else? A food allergy, a reaction to medication, the aniti-Ds you are already on perhaps? It's just a thought because if you had not had sah, the continuous headache would be investigated and not left for you to manage yourself.

I am sending you love and hugs xxxxxx

[amexdm]

Hello all:

Thanks to everyone for responding. The response is overwhelming and everyone has some excellent ideas. You'll be happy to know that when I ask for advice, I take it. I have an appt with the Pain Clinic tomorrow. I will ask about Amitrypteline?? as I have heard it works. May cause tiredness but oh well, how much more tired can I be?

Short work history- I work for a small company (40 people)for 3 years. It is 10 minutes (4 miles from my house). They like me and I love them. many friends. I work as a Help Desk Support for a 401k retirement company. Some days are very busy and hard. Some days are slower and easier. But a hard day combined with my bad health is debilitating. My dept is only two people so if I miss work it's 50% of the dept.I have a small pension from another company and 15 more years to work. Alot to lose. And alot to gain!

I will get in to see my GP next week although not super confident with him. Do need a physical and want blood test for liver with all these meds. Otherwise rest this weekend. i want to respond to EVERYBODY:

Macca- We can cry together. I am not afraid. It was good to get it out. i know you are in a similar situation and if I can help in any way, please ask. Like the car analogy. I say I'm a car with a quarter tank of gas and run out about 3pm

Maybe the song of the day is "Shattered" by Rolling Stones

Win, dear Windy-Not to worry, I will be fine. Your spirit and humor keep me going. I'm too tired to throw vases but I'll be back singing with you in no time. Lulu gonna hit me with her shoe tho

Gill- Not so much the strong silent type as much as don't like to complain. It took a lot for me to write this. I will go see my GP!

Lisa- Good advice. Apt at Pain Clinic tomorrow- see what they can do. Getting rid of pain should help me physically- like the outside the box thinking

Sandi-You sent me enough spoons to respond to this. Tough not being able to see the light at end of tunnel. Hope its not an oncoming train! My work has been great. They have allowed me to make my own schedule to some degree. But I work in a 2 person dept so if i'm out then there goes 50% of the dept. I'm gonna try and make it thru the summer with our summer hours but if not then I may try and ask for a couple weeks off w/out pay. They like and care about me and i think it is possible. It is a small company of 40 people.

Mary- I know you and I are in the same boat in some ways with work and insurance. Thank you for your love and support. You inspire me and make me want to keep fighting. I never have two good days so know what you mean. two bad days are tough

GG- Got your PM, will respond shortly. thank you. Did you get my message on the back to work thread about becoming a counselor? I am serious, you are wonderful

Rhiannon- ty for your kind words, going to the doc tomorrow. Dont really have Occu Health here, but some similar things- that is on my radar for next month

Winter- you're such a sweet person. I hope the best for you. I have been following you in the Green Room but no energy to repsond. I hope the govt takes care of you. As you know in the States, it's 6 month wait for disability and then you get denied and have to appeal. That is down the road for me but I hope not to need it.

Last but not least, the lovely Lulu Belle. Did you bring your frock to this party? New shoes? You are irreplaceable, unique and an angel. Well maybe not angel cause frock ummm errr. Win, Sarah throwing shoes at me, David ducks and says bring it on Sassy Lou!

You all mean so much to me and give me the will to fight on. I will prove the doubters wrong and make this work. I may have lost this battle but not the next.

Thank you all for listening,

David

[Carl]

Ever walk into a thread and think, I cant add anything?

Where to turn? I think you found the place, Right here!

I can relate to the headaches David, they can be very debilitating. The doctor put me on Propanolol and that lowered my blood pressure. I have only had a few headaches since. I know everyone is different and different meds work for each of us.

As for crying. I actually enjoy it. One of the benefits of SAH.

Hang in there my friend, you are in the company of the best people I know.

[MaryB]

I am so glad you responded David, I was so worried about you all day!

As far as anti D's go ........I have been on a boat load of different ones over the past 15 years. At first you think of yourself as weak, when I first had to take them was for my fibro and I was like "I'm painful not sick in the head". But later with education I understood more about the way they work and pain etc. nerve connectors going out of whack. .... bla bla bla anyway they do help. But sometimes they need to be switched to find the right one. I seem to run out of their usefulness after a few years and must switch.

A blow to our brains has been massive for each of us. Everyday I wish I could do more. This is not the life I intended to have, this is not the life I dreamed of. I thought I would still be going a 100 miles per hour. I have not had enough spoons to visit out of town family for years . Driving north of Chicago to see my nieces is something I expected to do all the time. No, this is not the life I thought I would be having. I feel badly that it is this way, I wonder if I collected all the credit cards offers I get in the mail and be totally irresponable, if I could quit my job and charge up a ton of bills and then file bankruptcy if I could have a good year of doing what I want instead of what I need to do or have to do.

This is a family here.

Maryb

[Sandi K]

Mary, were you sitting in on my last psychology session?

I kept saying this isn't the life plan, this isn't how it's supposed to be. I'm not supposed to slow down for another 8 years. Ugh!

David, I'm glad you responded, just like Mary I was worrying about you. Im sure many of us were! It's pretty incredible that you found the energy to reply to everyone! I hope this weekend brings you rest. A visit to the pain clinic is a great idea! There must be something that can be done for the headache. It seems we are all taking different things so surely there are more options available to you.

I really hope you feel better Friday morning.

Sandi K. Xoxox

[goldfish.girl]

Hi David, so lovely to see your fighting spirit coming back to you. I have also worried about you, it seems more shocking somehow when someone as positive and humorous as you has a crash like this. It's good to be positive but please don't use it as a front to hide behind while you're in here. If things aren't good, this is the safe place to let it out when/if you need to.

Good luck with the appointments and, again, it really is sooooo good to see you feeling a bit more like your old self. Amitriptylene was also something I tried for the head pain - it worked for me. I don't take it now and I understand how badly the constant headache can get you down and how rubbish it is to need pain killers that then wipe you out for the rest of the day.

Michelle xx

[Gill C]

David I know it feels like we shouldn't complain, after all we were the lcuky ones! I think if you are living with pain then you should complain, no one should have to live with that. I also had amytrip & it worked wonders for me in the 6 weeks before my anni was diagnosed & operated on, it was the only thing that helped but it did help me sleep lots too. I still take it now to help me sleep although it does worry me that I've been doing that for 2 years!!

I think getting the pain under control will def help but feeling more in control will help just as much. I have never taken any anti d's & never wanted to but I wish I'd spoken to my GP about them earlier as they make a huge difference to how I deal with things. It's not an answer for everyone but sometimes we can be too strong for our own good & we should get help in whatever form it comes.

Good luck with speaking to your GP next week, hope they can help you get back on track xxx

[Macca]

You see David?

When you call there are so many life jackets come your way, you can't be in trouble. We won't let you be. There are so many great, and I mean great, people on here. You might need to make some adjustments but that's all they are and when you make them you will wonder why you didn't make them before. I too was worried about you my friend - I'm sure you will have a much better day today

Enjoy - the sun is shining inside you to today as well as on the outside

best wishes to all especially those of you who took the time out to help David on this thread

Macca

[Liz D]

Hi David

I've just read your thread and I'm glad that you are making your way out of your dip. This site is such a lifeline. We've all had days when we've got nothing left to give, I know I have and the wonderful people on here helped me see my way through. You are so very right that we don't need to explain ourselves, the others just get it. The important thing is to come on here and post when things are tough.

Chronic pain is a dreadful thing to have to live with and hopefully the pain clinic can show you a way to some respite.

I manage to work 18.75 hours per week and read with awe the posts from people, like yourself, who manage to work full time.

As for crying. I asked one of the psychologists I work with why we cry. She said there are a number of triggers, one is that it's a response to a build up of energy with feelings. That it could be a sign of being overwhelmed and a need to address something. But more than that, she said it's a very important survival mechanism.

Be kind to yourself over the weekend and take care.

[Winb143]

David .... You are so kind xx...so don't kid a kidder lol...just keep happy when possible.....I'll sing later you'll be pleased to hear..did I hear you scream Noooooooooooooooo ..lol

Keep Well David and good luck....let me know when songtime is back..Thinking of you ...Be Well...and pain free soon pal....

Who threw shoe at David ????? picks up vase also xxx

Lots of Love

WinB143 xx xx

Okay 1 song for David lol....naaa j/kidding xx

[Guest]

Hi David

Sorry to hear you're out of sorts. I found Healing Touch to be extremely helpful in soothing the inner soul and quieting my mind. I did find my physical body responded positively as well. When looking at what I've been through in the past 11 months, there has to be some explanation of why I have bounced back from both my SAH and the cancer. I am not comfortable with drugs as the only option for an ailment. I research diet and supplement also.

I hope you do research options outside the box and try to stay positive.

Take care,

Sue

[Janet]

Hi David just read through the post and can really emphasise with you I have suffered with chronic neurological head pain for nearly five years since my clipping surgery. I take Amitritylene for the pain and have done for nearly 5 years now after trying a few other types of meds. My Doctor now allows me to self-medicate between 10 & 50mgs depending on severity of pain. It can cause drowsiness once I go past 25mg but it helps a lot.

I never got back to full time hours as I found it to exhausting and made the head pain much more severe so I only work 20 hours a week on an incoming call centre and since we moved office and my shifts changed to 3 days working 1 p.m til 8 p.m am finding it a lot harder both concentration and head pain wise.

After the first 3 years of pain and several referrals back to my Neuro-Surgeon he finally said that he thinks the pain maybe caused by a trapped nerve but as my clip is not MRI compatible I have to learn to live with the pain. I have been on a pain management programme and some of the relaxation exercises can help.

Hope you can find something that works for you constant pain is so debillitating and at times make emotional wrecks out of us.

[amexdm]

Hello All:

Thanks to all for your replies. An update and some perspective. I went to pain clinic. Asked about Amitrypeline and doc said wouldnt mix well with my other meds. My current pain meds work ok so not a big deal. I can manage the headaches ok. Its the leg and foot pain that are a problem. Can barely walk by end of day.Have an appt with GP on Friday to see about leg pain and get a physical. Sure he'll send me to a neurologist. Already been to one who was no help.

About the job. I have my DREAM job. Work with great people utilizing my best skills of math and communication. Good pay. Great boss and owners. Then I get an SAH. So understand my frustration.I can do this job in my sleep, no need to change.

For 9 months after SAH I worked at 65-75 percent and did fine. Usually would have 2 good days, 2 bad days and one so so. Now on my 10th month I have regressed to 40 percent health. Every day is horrible. Imagine how you felt 2 weeks after SAH. Then go work 36 hours. Thats how I feel now. Yes I need time off but now is not the time with our summer hours. Now am i not completely stupid (no comments) but if I am not better in the next 1-2 weeks I will have to cut back. I am hoping I get better.

I know whats wrong with me. I work too much. When I went from 31 to 36 hours is when this poor health kicked in. Perhaps I can only work 30 hours. Perhaps that is my max. But I have to try. I work for a small company so me not being there causes a burden on others and the business. I could quit it all and go on disability but then try and live on 250 dollars a week. Not ready for that yet.

Thanks to all who responded and I hope this helps you understand my despair.

Love to all,

David