Morning Blahs

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1

Hello, friends.

I am wondering if anyone else can relate to what I am experiencing. . . . .

Every morning, I wake up without Atypical Trigeminal Neuralgia Pain not yet kicking in, but with a general lethargy, achiness in my body and with a withered spirit. The reality of my situation hits home again. I wonder if I wil ever find an area of study which will could pay off, so that I can better support my chidren, given my condition.

I am seeking being approved for SSDI, on a short term basis. I need income while I seek higher education in a new chosen field. My many years in the home finance business are a head ful of worthless knowledge now. Plus, I do not believe that the I would be able to handle the stress of the position in addition to the pain of ATN.

My Aunt told me today that she does not believe that one is permitted to be a student and draw SSDI. I have not heard of such. I hope this is not the case.

It is very daunting to be 39 yrs. old (big, black 4-0 coming up next year), be a chronic pain patient, and have had my job training become virtually worthless! I am not a person who is often freightened by life circumstances.

Let me get to the point. I don’t feel like doing anything, and want to be left alone due to a general overall. My body aches and pops until around 2-3 p.m. in the day, especially the soles of my feet, and my ankles. After my medication really kicks in, I am fairly motivated. But, the flare-ups of my ATN begin at 6 p.m. I try not to eat big meals, so my pain medication will work better during this time. At 6 p.m, almost like clock work, the burning, aching, throbbing and pressure begins along V2 and V3 branches. I really need my medication at night.

I’ve become nocturnal. It’s when I can take care of things with a bit of pep. I muddle through business which must be taken care of in the early day.

I am wondering if my situation is due to depression, or if it could be that my medication is out of my system, and it is affecting me negatively. I am thinking of setting my alarm clock for 6 a.m., so that I can rise and take my medication. That way, it would be working before I wake up, and I may feel like doing anything in the early daytime. Of course, if my problem is depression, I doubt taking medication earlier is going to help.

I realize that this blog lacks eloquence, and perhaps even relevance. Perhaps no one else here has experienced this problem. I typed it with no proofing, or editing, as my youngest needs to be tucked in and my other half is growing impatient that I tuck her in, so that we may watch a show he has been waiting to see.

I am really spread thin. My teen thinks I am her taxi service. My other half wants to socialize with others when I want to be alone . My youngest child needs me very much! Plus, I am under pressure to seize what is probably my last chance to make something of myself, so that I don’t look back as an elderly person, knowing that I didn’t at least try to fight the pain and own accomplishment in my life again, both for my children’s sake, and my quality and posterity of life as a senior citizen. I don’t want to be sitting in a wheelchair somewhere thinking, “I’ve wasted my life, because I was not spunky enough to even try to try again in spite of Atypical Trigeminal Neuralgia”. I feel rebellious towards it, almost! I don’t want to be a burden on my children in my older years. Time is of the essense for me now, and this may be the source of my morning problem, because I face another day of being directionless. Or, it could be that I am dreading the late day flare-ups. Perhaps, it is a side-effect of the medications. Maybe it is all three!

Ok . . . .rant complete. Time to tuck in my baby, and pray that Mom finds a way to figure out what to do with the rest of her life, and that she receives the correct meds to help her out of chornic facial pain.

There was the anticipated comment of “How many more chapters are you going to write before you put her to bed”, coming from my husband’s. I knew it was coming.

Just blogging. . . .

Sending best wishes to all of my wonderful and supportive friends here in our group. Hoping you all have a more pain free week.

Your friend, who is trying to find a new normal in the face of ATN,

Stef

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Dearest Stef,

I cannot say with any amount of certainty whether your problem stems from depression or medications. I would be willing to bet however, that it is a combination of both! I too suffer the very same thing.

My situation is quite different from yours tho’. See when my Andy began working as a Night Shift Nurse we both just acclimated to the night shift times, and for whatever reason we have never changed our behavior. So we get up around 4-6pm, have dinner and play with our grandson then one of us takes him to bed and then we are up the entire night. I cannot begin to tell you how many times I have tried to get away from this schedule, but I always fall right back into it.

I do know how it feels to be so young and loose your livelihood. I was only 32 when I became disabled from the spinal arachnoiditis. It’s rough to be told that you will never work again, that you will spend the rest of your life on Opioid medications to control your pain. Stef I miss nursing so much that I dream about it almost every night. Many nights I wake up screaming that I am late for work, and other nights I awaken because I inadvertently forgot to give someone their pain meds. It’s a never ending dream for me.

Please check ASAP about receiving SSDI and going to school at the same time because I too believe this is not possible. I always love reading whatever you write because dear you write beautifully! Love you!

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Stef, I don’t know about the future, but I sure do admire your strength for all that you have accomplished so far…in spite of ATN!!! Peace, Min

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Stef, find little things that bring you joy - a candy that you can enjoy like Junior Mints they melt not causing pain, a flower you bought for your self. a warm bath, cup of tea - the warm seems to help me a bit, post a photo of a better time that makes your heart smile. These are small little things you can do for yourself and take that 5 min of me time. It is actually great that your not keeping these thoughts in your head and getting them out. These are just small steps but in your heart they can be huge.

as for money When I need a little extra I sell on ebay. I can help you with this if you need - very little contact with folks it's kinda nice. post office delivers free boxes and does pick ups too. Just supplements income although some have created a life out of it - but it's productive you feel like you have accomplished something when an extra 100 comes in and you didn't do much for it. Again happy to help with that. sounds like I take the Pollyanna road but I'm fighting this hard. I may need you to be strong for me in the future. Sending a Hug!

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Longer replies when I don’t have to work from the Ipad. I love you all, and this group.

I gave a lot to so many, and I love it here. But, whenever I need help, you are all still there for me. Thank you, all. Dana, Alibaby and Min. It’s hard for me to type on the Ipad, but I just wanted to tell you that you are wonderful . . . thank you so much for reaching out to a friend in need.

Yes, Dana. I hope I can return the favor someday.

Hard day with pain, and this Ipad getting on my nerves. I have to try to resurrect my old laptop again, tomorrow. Have to get the youngest in bed.

Longer replies to these posts coming.

Hugs to all of you.

Your friend,

Stef

P.S. I’ve been directionless and whiny lately. I just needed some of your advice and moral support.

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Hi Sis;

You have described how my life was for about 13 years. Stupid lupus/fibro body pain and ATN face pain till about 3 or 4. Then I was a night aowl after my meds kicked in (about 7 hours later). Now I set the alarm, I have meds and water on my bedside table so I don't have to wake myself up so much that I can't get to sleep, take the meds, then go back to sleep until they start working. It's a much more normal schedule for me since I started doing that. You're not alone. Most people who I talk to with fibro or body pain take most of the day to get going. I am wondering if there is any way to use your mortgage skills online for some big company. I enjoy my proofreading job that I do from bed, but I used to be able to keep deadlines. I can't do deadlines anymore due to TN... so the company just sends me work with no deadlines. ((HUGS)) I hope things will get better for you soon.

Blessings, Sheila

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Hi Stef

Sorry to see that you are going through a rough time. I think maybe it is the fact that you are getting to the big 40 and realise that you have to make a decision about how you want to spend the rest of your life. Like a cross roads. I know you have fighting spirit and this helps tremendously, so that is a great start. Maybe you could do a postal course of training online. In this way, you can tailor it to how you are feeling and pace yourself. The fact that you are not attending a regular course may still allow you to claim sickness benefit. Perhaps you should look into it. I think what you have to think of is what are your interests. One suggestion could be a counselling course. You have great communication skills, you have compassion and understanding, but also a drive which will help people. In this way you could put together all your skills and life experiences that you have gained up to now and help others going through difficult times in their lives. You never know, it could not only help you to focus on a goal but also to ensure that what you have gained up to now from all of this is NOT a head full of wasted knowledge, but just a different direction and one which will not only help you but others too. I am sure you will make the right decision, when you are ready to take the next step. Love and best wishes xxx

8

I can totally relate. I used to have a great job as a retirement planner, thank God I had disability insurance and then I also get SSI. I can’t go back to work. All the meds make me stupid and most days I want to sleep in so the pain isn’t as bad. It is soooo depressing. I want to contribute to society too, but I just can’t. I play tennis and do yoga and try to get together with friends. I have two little kids, a 7 yr old boy and an 11 yr old girl. Both are doing so well. My husband is very supportive most of the time. It is very hard on him. I was having some very good days and now I am in the pits so badly. I just can’t take this life sentence. I don’t think everything happens for a reason. There would be no reason that I sometimes wish I would die to escape this. I love my family so much I wish I could enjoy them more. I go to the kids activities and just can’t wait to come home. It gets worse as the day progresses.

9

Hi Steph. Seems that you are reaching a cross roads - the big 40 and what to do with the rest of your life. What about training to be a counsellor, which you may be able to do online. At least you can pace yourself for when you are feeling a bit better, rather than have to go through the regular course attendance that college would demand. Then at least you could see how you go with training to see if you can cope with it. You may find that this would not affect your benefits, rather than attending a regular course - you would have to look into this. At least it is a start and would give you focus. There is one thing for sure, your communication skills are great, your empathy with suffering is there, your care and compassion are there, your positive mental attitude is there to not let chronic illness beat you - what better counsellor could you want for and there are many people out there that would benefit from all your life experiences that you could bring to a job like this. Best wishes xxx

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Give yourself credit. You deserve more and you are a pretty sharp cookie! You cant punish yourself for a chronic illness.

You are a special lady and dont forget it! It isnt easy, thats for sure!

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Stef, try taking at least a small dose of the opiates in the morning. It will make a difference, or at least it does for me.

12

Sheila and Crystal’s advice worked!



Hi everybody! I have started setting my clock fro 6 a.m., one hour before I take my girls to school. The alarm goes off, I grab my water and take my meds that I have set on my nightstand from the night before!



I have to say that this has been great advice, for me. When I absolutely have to get up at 7 a.m., I actually feel human. I feel well enough to more effectively help my girls prepare for their day!



This is the type of thing I am brag about whenever I welcome newbies to the group. I often tell them that there is a lot of exchange of info going on. There is and through collective knowledge, we benefit from one another.



It doesn’t matter how long you’ve been active in the group, or how much you think you may know about your condition, we all need support someitmes. Thanks so much to you all for giving me some much needed propping up.



Just saying . . . .this has worked well for me. I am now more of a “day” person again. I’ve missed my mornings. This is such a simple little change, and it’s given them back to me! I am exercising again in the morning.



Thank you all my friends, for your replies. I just wanted to come back,update and let you know that Sheila and Crystal’s itty bitty piece of advice has made a big difference !



Happy Frieday!



Your friend,



Stef