Only two weeks to go until my first appointment with neurologist, starting to feel like it’s been forever, although I know I am one of the lucky ones getting an appointment within a few months. Thought I was doing really well just getting on with things, although been off work since May and it’s just hit me how ‘up’ I’ve been pretending to be with everyone who cares. Just having a bit of a wobble and feeling teary! Just putting this in writing helps, perhaps I need to try a diary. The pain has been getting me down for a few weeks now and relying on co-codomol until I see neurologist. Dr relectuant to give anything else until after referral which I can understand.
Huge thanks to this forum for being somewhere that we can just let off anxiety.
Helena x
Hi Helena,
I feel the same, Im keeping up and positive most of the time but there is some days, mostly when my symptoms are flaring up, I just can’t keep it up anymore. It doesn’t last long, a few hours. Have you any sort of indication of diagnosis? I am more fortunate in that I can still work, I am part time and days are spread in the week, fatigue hits me like a brick wall nearly every day, and if I’m not careful and do anything physical, I can be a few days dealing with weakness and pain. My second neuro apt is in 5 weeks, like you I was lucky had my first apt within 3 months and this second only 2 months, still the wait is unbearable, I just want to be doing something about it, but I know most neurological problems take a long time to diagnose properly, so I find some kind of consolation in the fact that this wait might just make it easier to get to the bottom of this, silver lining he!
Helena,
Having a wobble and being teary is fine. When facing the unknown it is easy to speculate and even easier to only think about bad stuff.
When I wobble I try to think about things as “different” or “the new normal” it does not always help but sometimes it reduces my anxieties.
Good luck with your appointment, I suggest that you try to be prepared, work out what you would like to know and do not expect definitive answers for everything because things are far too complex and dynamic for this. My other suggestion is that you have a friend or family member with whom you can discuss how you are feeling, it does not fix things but helps when they need to cut you some slack.
All the best Mick
Thanks Mick, that’s a very good point - work out what you want to know - something for me to focus on for a while. Not expecting too much from this initial appointment, just be good to speak with someone who may have some possible answers. Will work on talking to others!