Today has been another busy day, the kind of day I wouldn’t have managed a month ago. I’ve recently had a total change of my medication and it’s taken me from being being a sleepy, pain filled, non functioning person to one who can do ‘ALL THE THINGS’.
For many years I’ve simply accepted the medications and advice from my GP and I think that’s quite normal for most of us. During the Covid restrictions my health started to plummet into realms I didn’t want to stay in and I decided to take control. It’s been a hard fight so far to get medication changes and there are still things I need doing, referrals to specialists being a priority now, but taking the time to research medication regimes for your disabilities is key to getting the right help.
In the UK the NHS uses something called NICE guidance for any illness and disability a GP is presented with. One of the things you need to realise though is that these are just guidelines, it’s not set in stone and doctors should consider individual patient needs. On the other hand, knowing the NICE pathway for your illness can really help you get what you actually need especially when a doctor tells you there’s nothing more that can be done. These guidelines are all easy to access for patients if you know where to look so I’ll add a link for you at the end of this post.
Medication alone doesn’t fix things. So many people I know would love to have a magic pill that fixes all your problems and enables you to live a ‘normal’ life but it simply doesn’t work that way. You need to have the right mind set and attitude as well as a fighting spirit. Despite all the talk of equality, people will still treat people with disabilities as second class citizens, a drain on society, of little use to anyone. You need to fight every step of the way to get help and be heard and yes, I know it’s tiring, draining, and exhausting.
You aren’t alone if you feel like this but exercise caution. Not every forum, Facebook group, or coffee morning is helpful. Don’t be afraid to find people with a positive mindset and leave behind those who are happy to wallow in their problems.