Telling you my fears because I just can't tell my family

Forgive me everyone. I try not to be the kind of person who spills her guts to strangers but this place has become my refuge. The back story to this is a year ago I was very ill and on huge doses of prednisolone. The inflammatory arthritis had kicked in but i had only had one rheumatology appointment before i needed IV steroids for a scary attack of auto immune hearing loss. And I was so so thin.

I'm the middle of this we went on a long awaited family holiday. It was a disaster. I had convinced myself I was dying - the 60mg of pred a day probably didn't help my mental state!

I couldn't shake the despair and when o should have been looking at the beautiful sea and my beautiful children I was locked in a dark room in my head.

A year later and i am on the drugs and things are much better - except- with superb timing I chose the last couple of days to google the attacks of what I now know is called trigeminal neuralgia. And yes it can be caused by sjorgens or rheumatoid or lupus. And I would love to hear from anyone who gets bouts of this.....But it can also be a symptom of ms. And my head is in a spin. I just can't let myself do this again - diagnose myself on the basis of google - and ruin the holiday that we have booked back to the same place this year. The whole point was to go there happy instead of mental!!!!

I know what I must do. I must put this to the back of my mind until my neurology appointments on the 19th April. I can't throw away another chance to cherish what I have and hold so dear. But I am scared that I won't be strong enough.

Does anyone have any words of wisdom? If I even mention this to my husband I fear it will set the agenda and help no one. I can't put my family through another week of fearing for their mum.

Sorry about how long this is. Thank you

14 Replies

  • I am so sorry to hear how hard things are. I'm not sure that I have words of wisdom. But I do know that the lovely people here will support you in the best way that we can. Mary

  • Hi Bon1

    I'm really sorry to hear what a difficult time you're having of things. Sometime the fear of the unknown is so debilitating - once stuck in our head, it's so difficult to row ourselves of the worst thoughts.

    Before I was diagnosed late 2015 with AS and RA, I was being investigated for bone cancer. This took a few weeks from start to finish and I felt i died each and every day - paralysed with fear.

    The way I got through it was eventually understanding that it was outwith my control - i accepted I had to wait until tests were back and that freed me up a little bit to just concentrate on the here and now.

    Not sure that relating this will help much but just wanted to let you know that you'd been hear.

    Genuinely hope you find some solution and support .


  • Heard- not hear

  • I agree with Eiram that fear is the worst thing. The way I try to cope with these sorts of things is to make plans for all the things I worry might happen. That makes me feel more in control and gives me something else to focus on. So for a holiday I would talk to my GP about whether there are supplies you could take with you just in case. I'd make sure I'd looked at the travel insurance and knew how to get hold of emergency support. And I'd check out the place I was going to on google so I knew where there was /hospital and take a sheet of paper with the main points of medical history (google translate helps if you don't speak language of country you are going to).

    It may not conquer your fears, but when you start to worry tell yourself that you have a plan in place if it happens, take a deep breath and try to move on.

  • My symptoms mirror MS with my involuntary movements and trippy jerking movements but I don't have it. I too worry and stress myself out but this year I have decided to book weekends away and a holiday and enjoy life instead if fretting about waiting for appointments. You must not spoil your time with your family. Enjoy and celebrate your life

  • I think everyone on this forum would admit to having very dark thoughts and doubting their mental health from time to time during our journey with various illnesses. However, for the sake of your family, please try to rationalise your fears to help put it all in a box and close the lid for the week of your holiday. You know there is nothing you can do until you see your specialist, stay off google and take each day as it comes and I so hope you manage to relax and enjoy the time away. Think of how much you will enjoy revisiting happy memories and I really hope you will get there.

  • Thank you everyone. I so appreciate your words. I am truly touched. X

  • Sorry about your dark thoughts. We all have them at different times on our journey. Coping with any illness causes stress, panic and fear. We have to wait to see health professionals, wait for test results, wait for new medications and then wait to see if they work. I try to take one day at a time and enjoy it if it's a good day.

    I hope you manage to enjoy your holiday.

    Patsy 57

  • Hi Patsy - That fear is especially true when we are the only one we know dealing with these things, right?

  • You are right. That's why this site is so valuable to us. We can share things here and others understand exactly how we feel .

    Patsy 57

  • Yes as the rest have said we all know what it's like to have these dark thoughts as we've all had them and you feel so isolated because people don't understand what we're going through but we are all in this together and this site is a godsend for us to share stories and comfort each other xxx

  • Hi Bon1 - Keep in mind that all or none of what you Google may apply to you. These diseases are all the same all still, all different. And every single person that gets one or more reacts differently. Don't try to guess so much or you really will make yourself crazy (not literally - you know what I mean), and probably still be wrong. Remember that you are not defined by your disease, or any other single thing. Try to go on your holiday and enjoy your wonderful children and hubby.

    Might I suggest that if you want to Google some things that will help, try things like:

    Simon's Cat

    Superwoman (Lilly Singh)


    Cake Wrecks

    Parental Parody

    They are all funny sites that should make you smile watching them. OR, go get a musical fix of Pentatonix, Celtic Thunder, Baby Metal, Micah Tyler, or whatever your tastes are. Also, if you want to feel good, go watch the winning compilations of the XYZ'sGotTalent (the UK, American, South Korea, etc.). I LOVE the acts where someone or a group come on and like Susan Boyle everyone dismisses them, only to be absolutely stunned when the person or group starts their act.

    Then when you get back you can hopefully find out what is really going on with you. Good luck sweetie - Fingers crossed

  • Hi Bon1, if you feel you can't wait until the 19th, try and get an appt with your GP to establish if it definitely is Trigeminal Neuralgia - Dr Google doesn't always get things right and many things have similar symptoms, e.g. cluster headaches.

    If it is TGN don't despair as there are drugs that can help - my daughter was prescribed gabapentin, a drug normally used for epilepsy, which basically got it under control. Unfortunately she was pregnant at the time and couldn't take anything for the first 12 weeks and suffered terribly, but the good side is the TGN was triggered by her pregnancy and as soon as she had given birth it went away.

    As a side note, steroids are the only thing to calm a severe flare but my god they mess with my head! I'm an unrecognisable monster when I take them, full of rage and anger one minute, sobbing and suicidal the next. I don't think I'm the only person who reacts to them like this and 60mg a day is a big dose so I'm not surprised you got sucked into a deep dark vortex.

    Helix helix has given some great practical advice. My friend used to say 'you can't do the washing up until you get to the sink' so don't worry until you know for sure that it's TGN.

    Have a fab holiday.

  • Thanks again you guys. Going to live in the moment as much as I can for now. Maybe these illnesses have helped me a bit with that...xx

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