Still new with this.... emotions are crazy some days

Hi everyone,

I posted here a couple months back when I first learned I had this. Everyone was so warm and welcoming and so understanding. It's a breath of fresh air and THANK YOU! : )

I think i'm still going through all the emotions, some days very sad and cry, other days scared of the future-- but basically I can't get out of the mindset of total anxiety and fear of "what's going to happen from day to day". I over worry about every little feeling in my body and i may be (am) doing more harm than good. Has anyone else felt this way and what did you do to get away from the negative thoughts and fear, and focus on the positive? Help please!? I feel like I've aged 10 years in a matter of months!!

I am only on aspirin now, which I felt a difference with immediately when I began a couple months ago-- but lately I have been feeling little differences (i.e. small headaches are back (not like migraines before though), fuzzy thinking, lack of coordination, pulse-like feeling in legs, inconsistent leg pain.....) . For awhile the aspirin was great, but could it be losing its effectiveness? Or am I just over thinking all of this?

I need to live life fully, and right now all I can do is think about what disease I have and worry. I don't like being this way. Not sulking for myself, just down in general.

I am so glad this group is here to help each other. What a wonderful thing! Thanks again for any suggestions you may have.


11 Replies

  • Hi there, it sounds like you are making very good progress and I think we can all relate to the endless worrying. I am too only on asprin, which has decreased my migraines in their intensity, although when I fly anywhere or travel long distances they appear to try and make their mark a bit more. I think worrying can make us all feel worse, I certainly distract myself with as many things as possible, some people i know have tried mindfulness techniques when not being able to get worries out of their mind. For myself I only engage with people who really interest me and more importantly as well as love... make me shriek with laughter. All the best Mary F x Lots of people will have other ideas as well, ask away, it really is fine to do so.

  • Mary,

    Thank you so, so much. That already made me feel a little better. I'll be talking a long flight in the next couple of weeks, so we will see. I need to find better things to do and stop letting my mind run.

    How long have you been on aspirin? Have you had other issues besides the migraines? I know we can all be a little different. Just curious.

  • Mary,

    Just saw your blog, so please ignore my previous question.

  • Hi Hilarie

    I wouldn't worry too much at this stage about your emotions i think that is quite a normal response.

    It is important to remain positive and always remember that you own APS not the other way around, it's just a little hurdle that has been flung your way but you and your personality will always win over it, even when it does cause you problems.

    I saw that you are taking a long flight in a couple of weeks and I think it would be prudent to speak with your drs for any advice that they can give you. They may change your meds for the flight and remember to keep moving, even when sat down you can do ankle circles and lifts from your knees, the airlines give the info out to everyone and I have always followed it especially on long haul flights (and this was before I was diagnosed).

    You have asked about symptoms, I think that lots of us suffer memory, cognitive issues, I've had a constant headache (except for about 6 days) since April 2008. I have SLE, APS, diabetes and then a query as to whether I have vasculitis or vasculopathy. But the things we have and the problems they give us just make us more interesting, give us more spirit and more get up and go (even when we're really exhausted).

    Just remember that it's your life and some of us are given hurdles to deal with but there is always someone somewhere who is dealing with worse.

    This site is a great place to find out information and get support from others.

    Always stay strong and positive.


  • Wow Louise! You are so right. Sometimes we just need a positive dose of reality and some support from those that REALLY understand. It could be so much worse. Your positive spirit is inspiring. Thank you!!! Thank you!!!

    I will check with Dr. about long flight. What do you think about compression stockings? I'll be the crazy person getting up every 30 minutes and moving legs and feet in between getting up to move.... Haha. Really, I do appreciate your help today. Please let me know if I can ever help you.


  • I have been DX with Lupus Sjogrens Post Viral Syndrome Fibro and Multiple Tia's and last month was told I have osteoarthritis I have been ill now for 28 years and I am finally at peace and I don't fight my IlLneses any more I live day to day never look back never look forward it's the only way I cope and also take 40 mg of cipramil lol that my friends is BIG help IIve to help care for my hubby who was DX last year with Heart and Kidney failure we thank god the we are still together

  • Hi Hilarie

    I agree with all the above, not sure if anyone mentioned no alcohol on the flight, Drink loads of water before during and after the flight, that will help with exercise too ; )

    Depression is a terrible thing not sure if you have it, but you also need to discuss that with your Doctor to. I scored 28 out of thirty, thirty being the worst. I couldn't speak to the Doctor about it. in the end a note helped.

    I used to actually sob, waking up crying in the night, thinking of all the bad things life would hold for me.

    It doesn't have to be like that.Now I am on antidepressents I have got a whole new atitude to it al.l I am able to talk about how I feel or felt to the family.

    I no longer cry everyday.

    I can't recomend antidepressents enough.

    Good luck

    Love Karen xx

  • Im so sorry your feeling this way, for a lot of people there is such a long way to diagnosis - and for me too - the first feeling is not of worry - the worrying has been done while knwing something is wrong but not beng believed, the first feeling is just pure relief. If anybody with any other illness was told they were ill with a disease then they would be upset,and worrying but its just relief that you finally have a diagnosis and its not all in your head and you have a reason for feeling so low. Because people look well on the outside other eople cant see it, and sometimes on a good day you may even feel like questioning if there is anything wrong with you, i do a lot, and battle with the prejudices that come with it all from people who dont understand, or see an 'ill' person standing in front of them,but this site is full of strong people who are all too easy to kick you up the bum if your feeling low, bu with lots of sympathy going through the same too. wish you well x

  • Emma what you have said has struck a chord with me about even questioning it yourself. At least three times I have gone through with a dr the things wrong with me and questioned if they've got right.

  • Karen and Emma and all, thank you for taking the time to write. I think I'll print out each persons comments and read everyday for awhile to remind me. I will also take your suggestions about depression and air travel seriously. As I'm sure I could be slightly depressed just from the news. Thank you! I hope I can be of help to you all someday. Warm wishes and love- Hilarie

  • I would only add that I had the same emotions when I was diagnosed with what was then called Lupus Anticoagulant back in the early seventies.All these years on I enjoy my life though I cannot deny that there are days when I feel rough. I suggest that you get to understand the disease (but don't take too much notice of the negative sides) get the right medical and family/friends support, and then get on with life. And remember you are amongst friends.There is life with Hughes- and it can be exceedingly well worth living. :-)

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