This question is a highly emotional one. I wanted to raise this question in LDUK’s Online Community because I am extremely lucky to have such a strong support system. However, this doesn’t lighten the load of guilt and disappointment I feel. I know so many sufferers will feel guilty about ‘not giving back’ as much as they feel they should when loved ones do so much. We feel a drain and feel we cause extra stress and affect our loved ones’ lives so greatly. We often worry that they don’t get their well-deserved ‘me’ time, that they miss out on events and experiences due to having to take care of us and it can often be a rather thankless task with nobody really highlighting their amazing hearts & hard work.
With this blog I wanted to shed some light on our unsung heroes, to tell their story and to show how difficult it is to watch someone batle with Lyme disease. I also wanted to celebrate their hard work. We are truly grateful to them as sufferers in need of care and support. Personally it kills me everyday seeing my mum canceling plans, having to think about car boot space for the wheelchair, lifting wheelchairs on and off buses, leaving events early to get me home, driving me around everywhere, sitting endlessly in waiting rooms, arguing with doctors to get me treated and being my number one shoulder to cry on when my world feels like it is caving in, my pain levels are extremely high and I feel like I want to give up.
The people who make up our support systems are our lifelines, our cheerleaders and our shoulders to cry on. Nobody can ever down play the value of caring for us, entertaining us, telling us stories and jokes and distracting our minds from the horrors within. These people offer a form of relief that a pill simply can’t.
Although they see us crumbling, crying, getting angry and annoyed regularly, rarely do we see them break down. They know they are ‘expected’ to be the strong ones in the relationship. In their eyes, they are the support system and they can’t be seen to be struggling in case it has a detrimental effect on the one they care for.
Lyme disease sufferers aren’t the only ones harbouring guilt. Often supporters worry whether they are doing enough to meet our needs and they can feel powerless even when doing so much to take care of us.
I always say how chronic illness warriors are the best actors and actresses. WHY? Every day we get up and fight, we paint that smile on and mask the pain behind with a brave face. We aren’t the only ones. Who are the first people to lift YOUR mood up in the morning with a chirpy good morning and a dose of motivation served up for breakfast? Your supporters if you are fortunate to have them around you.
The pain WE feel – they feel it too.
We can’t give back EVERYTHING and ALL they do for us but our appreciation, gratitude and understanding of their feelings too are crucial. Like friendship, support is a two-way road and that is how we must choose to see it.
The best things in life are free. No, sadly we can’t often change the situation we are in. Look around. Enjoy the people around you. Make memories with them, laugh with them, brighten your own day as well as theirs.
My heart strings were well and truly tugged when I read the responses from members of our Online Community and more than ever I wanted to highlight these heroes and give them some much needed credit. Here is what you told us as carers for those with Lyme:
‘Seeing my once strong husband struggling to walk with his dire balance problems and having to hold onto me to walk breaks my heart. He should have been diagnosed correctly at the outset when he had a bite with a bull’s-eye ring around it. Years later he was diagnosed with MS by mistake before they realised it was Lyme disease. This makes me so SO angry but there’s nothing I can do about it except be on his side with all the doubting doctors we come across. I hope the medical community stops being in denial and updates their knowledge about this debilitating condition.’
‘I use to watch my hubby train everyday and compete in competitions. Now I watch him have seizures in hope they don’t last too long… I’m so angry too… I don’t have much respect for doctors anymore….I’ve met so many arrogant, know-it-alls…. in particular, a neurologist! I’ve only met a hand full of good ones who have empathy and actually care.’
‘Heartbreaking! Wishing it was you and not someone you love so much.’
It is important as a carer to reach out for support if you feel you need it. Here are some links of support networks that may be of use to you:
“Our telephone helpline providing information is open on Mondays and Tuesdays between 10am and 4pm – 0808 808 7777”
Carers UK Forum:
“The Carers UK Forum is our online community of carers and is available to Carers UK members 24 hours a day, 365 days a year.”
3 in 5 of us will care for someone in our life. We all need to have the support to support otherwise how can we empower others to keep fighting? Communication and being open is key. We need to listen! Really listen and never doubt that in our own way, we can support one another. There should be no comparisons or judgements made. As long as you are doing your best – nobody can ask anymore of you.
So, I challenge you to give out a hug to someone who cares for you and make someone’s day!
I hope you have enjoyed this blog and although it was an emotionally difficult piece to write, I am so pleased and honoured to celebrate the unsung heroes.