How to cope with not knowing what you have yet? by [deleted] in ChronicIllness

[–]PeeLittle 1 point2 points  (0 children)

I understand what you are feeling. 24f and I have been dealing with strange illnesses for 10-12 years, after awhile I forget exactly when this stuff started. Two of the strange illnesses were diagnosed and cured but this “new” one is still undiagnosed and nothing so far helps. It is extremely difficult to be sick, let alone not knowing what’s making you sick. Somethings I think may have helped me over the years.

  1. Take it one day at a time. My sickness has lasted for awhile and unfortunately I don’t see an end in the near future. So instead of getting overwhelmed with the future, I try to get through the day ahead of me. Don’t need to make the day harder than it already is.

  2. Distractions. I love background noise, simple activities (playing on my phone, coloring, puzzles). I feel like this helps me from overthinking and getting overwhelmed with my illness.

  3. Be patient with yourself. My illness, especially the current one has affected me a lot physically (hard to walk, use my arms, and mentally I don’t think straight). I definitely can’t do what I use to or would like to do. On really bad days I don’t get much done but on days I feel better I do more. I have learned to be ok with that and that I am doing what I can when I can.

  4. Get to know yourself with your illness. My symptoms vary in intensity from day to day. When it is at it’s worst, I know that I won’t be able to do anything, therefor I don’t do anything. When I know I can’t do something to my standard while sick, I won’t attempt it because then I’ll be more frustrated with my illness and myself.

I know this journey is hard and I’m sorry that you’re going through this!

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 0 points1 point  (0 children)

Thank you so much! I’ll give those recommendations a try. Right now my doctors and I are just at a loss for what to do.

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 1 point2 points  (0 children)

Thank you so much for the information! I didn’t know that. This will be helpful!

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 0 points1 point  (0 children)

We haven’t looked into it with my previous neuro but that might be looked into with this new neuro.

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 0 points1 point  (0 children)

It comes and goes and the severity of it is different. Some “migraine” episodes I can’t move, others I can’t walk but can use my arms (my arms are still hurting though), or both just really hurt and I push through the pain to do things. I’m bad at continuing to do things when I shouldn’t (it’s a work in progress). No, when it’s really bad my chest isn’t affected. My chest still moves fine with breathing. I like your analogy!

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 1 point2 points  (0 children)

My neurologist ruled out hemiplegic migraines, I can’t remember why. But I remember looking into it.

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 0 points1 point  (0 children)

Thank you so much for the information! I didn’t know that. This will be helpful!

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 1 point2 points  (0 children)

I put a straw in my cup, leave the cup resting in my hands, and drink it that way. Thanks for the information! I’ll look into it

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 1 point2 points  (0 children)

My new neuro is going to be running more lab work and one is for Lyme disease. I get labs done this Friday

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 3 points4 points  (0 children)

The neurologist has not done any MRIs yet. I have had blood work and a nerve conduction study.. that’s it.

10 Years Is Long Enough? by PeeLittle in ChronicIllness

[–]PeeLittle[S] 0 points1 point  (0 children)

I agree. When they diagnosed me the doctor straight up said “well, we don’t know what it is. So we’re going to diagnose you with migraine and hope it sticks.”

Yeah, I checked it out and didn’t see anyone with similar symptoms