Six things Chronically Ill people need to learn
09:00
I feel like this is going to be a bit of an inflammatory post, I really do, especially within the spoonie community, or whatever it is we are calling ourselves these days. Are we warriors, spoonies, or munchkins? I don’t know. What I do know is that there are things some chronically ill people need to learn. I find a lot of the community to be incredibly negative and it personally puts me off.
1. You are not your illness.
You were a person before you got ill and you are still a person. Whatever your illness is, it doesn’t define you. If you were Andrea with the multi-coloured hair before you got ill, as long as dying your hair doesn’t make you worse – I know with some illnesses you become really sensitive to things so don’t make yourself ill to prove a point – you can still be Andrea with the multi-coloured hair. I’m still the same person I was before the diagnosis. I just move a little slower and rattle a little more than I did.
2. Communication is a two-way street.
You would not believe the number of times I have sat at my computer reading online support forums for fibromyalgia where the woman are complaining that their friends never come and see them or text or call. Then they go on to say that they don’t have the energy to go out and see their friends. If you have the energy to whinge and whine about your friends on Facebook, you have the energy to text them yourself. One of my best friends works full time and has a toddler to look after, the other has a toddler and lives almost 250 miles away, yet we are all still able to keep up communication. Sure, it’s not as great as it was, but we still talk and are still there for each other. If I haven’t heard from one in a while, I will send a text. If one hasn’t heard from me or remembers that in the last message I said something was bad, they’ll check up on me. Don’t rely on your friends to do all the work.
3. Doctors aren’t miracle workers.
In the UK, we have the NHS and let’s be honest it’s pretty good. If we’re being truthful, we know we’re lucky to have the NHS, but we aren’t always grateful. It’s easy to overlook the fantastic things the NHS has done, is doing and is going to do. Believe me, I’m guilty of this too.
However, whilst we have this fantastic service at our fingertips. We also need to realise they don’t perform miracles. I know this is hard when you are in agony or when you are tired for no reason. There are only so many different painkillers they can try before they are prescribing the strong opiate based ones. Which many are reluctant to prescribe due to the addictive nature of them, making them really only a short term solution. The longer you are on them, the more likely they are to stop working, become dependent on them, and when that happens you’ll need a larger dose to get the same relief you once got. My doctor refuses to even consider anything like tramadol or morphine for me, purely based on my age as I’m 25. When you have a chronic illness, sometimes all you can do is manage the symptoms which actually brings me onto the next point.
4. Stop looking for a cure.
Once again, you would not believe the number of times I have been to a support group – both online and in person where people ask about the newest medications and ask “so what tablets do I need to ask my doctor for?” Oh, it drives me crazy! Nine times out of ten, these people don’t ask their doctors for their suggestions of what may help, they outright demand for these medications. All medicines react differently within the human body. For example, I am the only one in my family who can’t have paracetamol due to it making me nauseous. I can handle opiate based medications but one of my best friends can’t. We all react differently. We are all at different stages with our illness, compared to some fibromyalgia sufferers, I actually look like I am a well person but when you compare me to a well person, I look sick. As we are all at different stages, we all need different medications and different strengths. We also handle pain differently. For someone who is in a lot of pain, they may rate it an eight out of ten, but someone else who is in the same amount of pain may only rate it a four out of ten. It depends on the person.
The thing about having a chronic illness means it’s ongoing. It’s unlikely it will ever have a clue. If you keep chasing a cure, you’re going to drive yourself crazy. I’m not saying don’t stop hoping there will one day be a cure. I’m saying stop chasing very tiny sliver of hope because someone said drinking a tea made out of the leaves of a tree that grows on one side of a hill in Timbuktu for only three months out of the year, whilst taking this specific regime of tablets. Jumping from one medical fad to the next isn’t going to help anyone. That said if chasing each medical fad in hope of a cure makes you happy, go and do it. Just don’t come running to me when your hopes are dashed and you’ve started feeling depressed again because you feel like you’ll never get your cure.
Yes, I get it can be difficult to get out and live a normal life. Believe me, I know. But, there is no point in putting hurdles in your way. It just makes life difficult. Yes, sometimes it’s easier to ask friends and family to come to you, but other times it’s not possible. Sometimes you need to make the effort. As my two best friends have kids, I have come to the realisation that they’ll probably be late when we arrange to meet up. Kids like to act up when you have to leave. That’s life. There’s no point in getting worked up over it, especially as it will affect me negatively later. If you can’t walk far, suggest meeting at a local café. If your friends have kids, suggest a soft play. Try doing alternative visits, one time she comes to you, the next you go to her.
Don’t automatically assume you can’t do something because of your illnesses. The number of people who said to me when I told them I was going to Thailand was “Oh I’d love to do that, but I can’t because I’m ill.” I’m ill too but I went. I had never been on a long haul flight before and I managed it with a little bit of planning. I do things people tell me I can’t do, not to be an ‘inspiration’ or because I have something to prove to the world, but because I want to. If I want to go walk up Snowdonia, I will. I’ll probably not manage but I’ll give it a damn good try. If you keep putting hurdles in front of you, you’re going to find you are becoming more isolated and more upset at what your life has become. Life doesn’t end with illness. It starts with doing something.
Sure it might make you hurt and feel fatigued, but let’s be honest you’d feel that way anyway. Why not have a reason to hurt and be tired? Makes life a lot more fun.
At the end of the day, I’d rather hurt because I spent the day before running about with my younger cousins, catching up with friends making memories than because I sat on my bum watching reruns of Real Housewives.
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