ava179 years ago

Hi Jennifer it's ava here. I know exactly how you feel. The mornings are dreadful really bad. Infant the last 3 days i have been in bed the curtains shut etc font want to see anyone. Your not alone is the main thing i am in the same position. I also need help and are taking all sorts of meds as well. I feel like I have zero energy and no motivation. My head hurts its horrid. Many people will advise which is great. Small steps they say even though I can't do that either.

Ava

pen727 in reply to ava179 years ago

Oh I know... It's like forget the steps; I'm in a crawling mode...

I'm so sorry you're having to endure the same thing. You mention having the curtains drawn--do you find in the summer light it is harder to "live and move and have your being in"? I'm always more depressed starting--maybe mid April...the good news is: the Solstice has passed, the days are getting shorter and every day the light ( even tho it's kind of imperceptible right now) is shining at more pleasing angles and not so head-on and unbearable bright.

Are headaches a side effect of your meds? For some reason I'm not being able to refer back to your post--but it sounds like you just started several different meds and that's always hard.

And I'm sorry this post is so long because if you have headache you probably don't feel like reading at the moment.

Still, thank you Ava for taking the time to answer and encourage; esp. when you're feeling unwell. In fact, -that's a pretty big leap! (A kind of flight even)

I'll be hoping your head stops hurting--and also that you do well on the meds. Not very adept at getting around the site but hopefully we can keep in touch.

And again and again, thank you for helping lift me up (and not feel so alone).

jennifer xxx

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ava17 in reply to pen7279 years ago

Hi Jennifer, not good at getting around the site myself. I suffer with severe migraines which is affected by sunlight, noise and smell when I'm having an attack. The other month i had 14 attacks that lasted over a week. Yes this feeling is dreadful i don't even know what I'm writing and feel who am I to reply as I have no magic wand for this dreadful feeling Jennifer. It's horrendous it really is. How are you ? Ava x

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pen727 in reply to ava179 years ago

Ava, hi, it's Jennifer.

That's a lot of pain you're dealing with and it seems fairly continuous...

And bless you for writing--I'm having headache now and it's so hard to focus

But I didn't wake up this morning under that horrendous feeling--and that hardly ever happens.

dreadful is a good way to describe it. I don't know. Does it get better for you as the day continues?

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ava17 in reply to pen7279 years ago

Hi Jennifer this forum helps a lot knowing others are in a similar position. It's extremely hard after my dad told my mum today that I am lying about my illness and won't visit them because I want to avoid them . Told them i was suicidal and in hospital what proof do they want ' a funeral'. Anyway crap day again of negativity from my controlling father .... Fed up, how are you? Ava x

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pen727 in reply to ava179 years ago

Oh no. I'm sorry -- it's very hard when family doesn't understand. Are you getting good care where you are? It won't always be this way--the meds help and eventually you'll see some clarity.

I know that's hard to believe right at this moment.

Jen. xxx

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pen727 in reply to ava179 years ago

And Ava, I'm sure it's hard for you a Dad to know you're feeling so bad and suffering to such an extent. Maybe he really wishes that the problem is what he told your mom. Just a thought.

jen x

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ava17 in reply to pen7279 years ago

Jennifer hi how are you ? Not slept all night due to dads comments. My dad is a control bully mental abuse of him all my life.. So changing my mindset is the hardest thing as he won't change at his age now ..... Thanks love Ava. X

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pen727 in reply to ava179 years ago

Ava, hi. Hopefully right now you're getting some sleep. But I understand what you're saying. Have had a similar problem and am sorry you're contending with such.

If you feel up to it, it would be good to hear how you're getting along today.

Now if you are still awake, please try to relax your mind of that train of thought that we both know well. If even only for a pause of time.

Love, jennifer x

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pen727 in reply to ava179 years ago

Ava, Jennifer again in kind of a P.S. Just go for a pause of time. Don't get discouraged if you keep finding yourself back on that track--that's good; it means you can pause again. There's a whole lot of good in a moment, you know... .

And Ava, how you helped me on Sunday--esp. Given the situation: so very well done! Heartfelt thank you.

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ava17 in reply to pen7279 years ago

Hi Jennifer how are you ? I did go to sleep for a bit yes. But gosh my head feels so heavy you know that horrid feeling. Fed up of the family not understanding especially my elderly father maybe it's a generation thing. I'm back in bed after eating its like my comfort zone. Will this ever end . Thanks Jen love Ava x

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pen727 in reply to ava179 years ago

It's the couch for me usually; but today was a bed day too--and getting up to go to the bathroom due to side effects of medication. I know that heavy head feeling. Today mine just felt very fragmented. I tried to knit, read, write---but I just had to lie down. and practice those pauses we talked about---that's how I got to sleep last night. It's good to hear from you, and I hope you get a good night's rest and wake up tomorrow feeling as good as is possible. Love, jen. xxx

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Photogeek9 years ago

Hi Jennifer that's very Tough. I am on Plaquenil too for arthritis, and it's hard

When your not well . Maybe try and be very good to yourself and look after

You. I'm sure your family don't mean to be hurtful, they maybe have no

Idea how debilitating it is.

This is a great Forum and you will get encouragement and support

From us.

Hannah

pen727 in reply to Photogeek9 years ago

"This is a great Forum and you will get encouragement and support

From us."

It Is. And I have been all over the internet for years looking and ...wow, really.

I hope you can imagine how comforting reply is being. I know that I'm oversensitive, maybe to the verge of being a bit paranoid. The option you present, about how my family is not being intentionally hurtful, is a mindset that I may do well to consciously try and consider.

Everything seems to hit me at the hurting point sometimes.

Do you find the plaqunil helpful? I notice a big difference if I don't take it--I missed a few days once.

Thank you for the good reassurance, and for helping me feel part of this group.

Jennifer x

P.S. You probably know about this, but just wanted to say something about getting regular eye exams being on plaquinil. I'm overdue... .

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Photogeek in reply to pen7279 years ago

Hi Jennifer

Yes I find the Plaquenil good and thanks for reminding me about

Eye exams.

You will get to know us all after a while , it's just that Plaquenil

Caught my eye.

I think it's hard when family support is lacking, I have that too, or

Should I say , I don't have any family support. I try not to be

Resentful as everyone seems so busy with their own lives,

And they don't understand or want to know about Depression.

Try and just build your own resources up and make friends

Outside the family .

We will be here if you need to have a chat or a giggle.

Hannah x

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Suzie409 years ago

I'm sure you're not a burden, Jennifer. You sound like a lovely person and it's very kind of you to take the time out to email your siblings about things that are relevant to them.

It's a huge shame that you don't feel loved or valued. I am wondering if you actually know this, of whether you've let yourself believe it based on the way that they make you feel. There is a difference. Sometimes people are too wrapped up in their own worlds to take time out and think about others. That's not to say they don't care, though.

I know that feeling of waking up in 'doom'. Mornings are usually my most difficult time too. Do you have something that needs to be achieved each morning? Sometimes having a focus can help keep away the bad thoughts for a while. For me, the routine of getting the kids up and ready for school is all I let myself think about in the mornings, so I don't get tempted to sit and feel sad x

pen727 in reply to Suzie409 years ago

Thank you Lucy. I didn't wake up under cloud, which is amazing -- writing back gave me something definite to this am. I'm not sure I understand the difference you mean....but I've read some of your posts and I really relate to the dynamics (relationship) you've written about.

Doctor told me to leave ofF Methotrexate ( for lupus) this week b/c I'm having some bad GI effects. I usually take it on Saturday-- I'm writing now with headache and feeling awful physically.

Yesterday I realized I forgot my sister-in-laws 50th birthday. She and my brother are coming in July.

Both of there birthdays are in June; my brother said, "don't mail anything" so I was thinking about what to do when they are here--and the date slipped by. I have written 2 emails apologizing; no word yet.

Thank you for your kind reply, (and thoughtful posts). I hope we get to talk again when I can think clearly.

I hope you have a good quality day.

j xxx

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pen727 in reply to Suzie409 years ago

Thank you Lucy. I didn't wake up under cloud, which is amazing -- writing back gave me something definite to this am. I'm not sure I understand the difference you mean....but I've read some of your posts and I really relate to the dynamics (relationship) you've written about.

Doctor told me to leave ofF Methotrexate ( for lupus) this week b/c I'm having some bad GI effects. I usually take it on Saturday-- I'm writing now with headache and feeling awful physically.

Yesterday I realized I forgot my sister-in-laws 50th birthday. She and my brother are coming in July.

Both of there birthdays are in June; my brother said, "don't mail anything" so I was thinking about what to do when they are here--and the date slipped by. I have written 2 emails apologizing; no word yet.

Thank you for your kind reply, (and thoughtful posts). I hope we get to talk again when I can think clearly.

I hope you have a good quality day.

j xxx

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wallflower_fairy9 years ago

Hi Jennifer,

Your poor love - it seems like you may be experiencing the grief of the changes in your life and relationships associated with having an illness. Such people are ignorant and I think when have an illness such as the one you describe it shows you who your true friends are, although it can be incredibly hurtful too. I don't know if you've ever heard of the 'spoon' theory, but it's what some of us invisible suffers use to explain to healthy relatives what it's like to be us - not the medical definition of Lupus, Depression, or Fibromyalgia (which is what I have), but what it actually feels like to be us, to be sick. butyoudontlooksick.com/wpre...

Lucy makes a good point that some people just get wrapped up in their own lives and can thoughtless of absent minded, but it doesn't mean they don't care deep down. Just wait and see if they respond...

I know you say mornings are the hardest, I think the best way to tackle this is to have a good sleep routine and get as much as you can ready the night before so it's minimal effort in the morning. Your outfit for the next day, you could even have your tooth brush next to your bedside table with your toothpaste, mug, and a bottle of water, and facial wipes, and perhaps even a flannel, so you could start washing yourself before you've got out of bed. Maybe once you've feeling cleaner and more refreshed this will give you the confidence to get up and start your day. Music might help too - a couple of times I have felt particularly exhausted when getting ready for a morning lecture at uni, I have stuck my earphones and listened to my favourite songs while getting dressed.

Hope some of this helps. I'm really frazzled today so I kept having lapses.

Healing hugs,

wanderingwallflower xx

pen727 in reply to wallflower_fairy9 years ago

Thank you Faye. I think you're right about the grief.

It was about 51/2 years ago and i had to leave what I thought was my home and family-- the person I was married too was always drunk and seeing someone else, the house was literally falling in. And I had to leave my life there-- I didn't even get my work... It was like a fire.

I had been sick before and when I got here was diagnosed with lupus.

Anyway, I can't seem to get over it. I got an email from my brother telling me that I really need to relax--and that's true. It just seems like I'm getting worse instead of better.

You're very right on.

I hope you're feeling better today.

j xxx

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Hidden9 years ago

I am so sorry Jennifer. It's not your fault though and I am sure your family know this. It's probably hard for them to know how to help you. Have you told them how to? As for the emails those of us who are ill often forget that healthy folk tend to have active and busy lives and haven't always got the time to respond, and if they do it's often hurried. Maybe that's what you are picking up? It doesn't mean they love you any less, it just means they have to juggle priorities and haven't always got the time to reply in the way you would like.

I really hope you are feeling a bit better soon. Lovely cuddly hugs just for you. xx

pen727 in reply to Hidden9 years ago

Hi.

Thank you. Your words are wise and kind and I'm really making an effort to think about it that way.

I'm sorry about taking so long to respond--I had to kind of process everything, and then there was the freak-out period ( I've never been in an online group or forum before. I do belong to the Lupus part of HL, but this is kind of different). And I had a total melt-down because I forgot my sister-in-law's Birthday.

Isn't that kind of ironic, given what I wrote previously?

They do have active and busy lives and I'm hypersensitive.

And I can't help it: embarrassed because I'm sick and unproductive.

About 15 weeks ago, I started a new med for lupus and it was working like a miracle for about four weeks. Not to bring up a bad subject, but my lower GI system has stopped working. Last week doctor told me to skip the MXT this week and start taking Miralax. I must not be drinking enought water.

Thank you so much for your super-kind understanding. It really does help; and I hope you're having a good day.

jen xxx

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Hidden9 years ago

You are welcome Jen. Am so pleased my words helped you. (((((((((((((Jen))))))))))))) xxx

JacquelineF_2099 years ago

Hi Jennifer, I am new here.....but have been treated for depression for around 5 years now. I wonder if I will ever beat it too. I am waiting on a diagnosis for lupus, all the tests are being done, just waiting on a label! I understand exactly what you are going through - I find the mornings hardest and often wish I hadn't woken up, but my husband and son keep me going. It is a difficult time for me right now, but in the past I have used journaling and writing to help me through the worst times....right now my head feels so fuzzy I just don't have the energy for anything but I am going to ask my GP for a referral to see a psychologist I think. My family have been good, but I am feelng that I ask too much of them and it is time for professional help to get all this stuff into perspective.

I hope you feel better sharing here.....sometimes it helps just knowing others do feel the same and we understand

pen7279 years ago

Jacqueline, thank you for the encouragement. It is kind of you to write--I've had that fuzzy feeling most of the day. I wrote a reply but lost it, which is probably good because I don't know if it was very coherent.

Anyway, It sounds like an excellent idea -- getting a referral (Even tho it sounds like you've got a great Home Team!)

And especially if you have lupus.

I was diagnosed with lupus 5 years ago -- I'm in a flare now and it seems pretty much stay that way; stress makes me have active flares, sunlight, sunscreen because I'm allergic to it, etc. I hope you don't have it, but is you do, you're in a good place. I found here maybe 3 or 4 weeks ago and things are making more sense--I'm getting a perspective that is more healthy at least. I hope you're feeling better ... Thank you again. Jennifer xxx

And a good idea about the journaling---for so many reasons. I stopped because it is hard to write when ones head is fuzzy, but you're right; it is helpful.

Haazbeen6 years ago

I hope someone can help us answer that question pen727. The highlight of every day at the moment is going back to bed!