For those of you out there that are in the role of carer in some form or another you are amazing. Please remember that. None of us actively go looking for this job. Most of the time you never consider this will happen to you. Then it happens and you do it out of love. Without hesitation. It can test that love on occasion. It can place stress on your relationship. That stress can have ripple effects into other aspects of your life but no matter how hard things get you are not alone. Never; ever forget that please.
There are days when it gets really hard. The endless appointments. Paperwork. Researching. Reminders; without them I would be lost. Thank heavens for my mobile calendar. Adjusting day to day life for your new reality, which in itself can change constantly. I can tell you one thing without hesitation. The person you are caring for is so grateful. They may not tell you but you are their rock. They probably hate that they have put this pressure on you but they love you for not running for the hills.
Recently it has hit home at how much things have changed for us. A consultant put husband on a reducing course of steroids. Something that a lot of medical professionals don’t like doing due to the long term side effects. A week in and I had my old husband back. The aches and pain were greatly reduced. He had more energy. His mental health was transformed. He was up early; keen to get to the allotment. Searching online for new recipes to try. Anyone that knows my husband will tell you he loves to cook. The shocking thing is him being online. Trust me even I struggle to get my head around that.
Usually after a trip to the allotment there would be no chance of doing anything else but now he was, lets got to the pub. Shall we go for lunch? I was looking at him thinking I could do with some of that energy. I had mentioned something I was thinking about getting: come on lets go shopping. Wow it was like we had reversed roles. Don’t get me wrong he wasn’t cured but the improvement was incredible.
Now the course has finished. The tablets taken and the benefits I am sad to say have left the building. It is so hard to see that light dim again. I know for me that the trips out are now back to the rare good day. He will make that effort for me so that I get out occasionally. For him though it is a hundred times worse. The pain is back. He had a taste of being able to do a lot of the things he used to and now he can’t. I know he won’t give up but it will all be with so much effort and discomfort. We now seem to have some side effects from the new tablets that we didn’t have before. Thankfully we have an opportunity to ask about those in the next week.
My husband would happily take those tablets for the quality of life and suffer the side effects later. That is not likely going to be an option. It is something we are going to try to get them to agree to but chances are slim. Quality of life now while he can enjoy it makes more sense than trying to hold off side effect that happen years down the line. Years he might not get. I know. I hear that intake of breath. We have to be honest. With all his issues he may not have decades left. So why shouldn’t we enjoy the now. In fact none of us know what tomorrow holds. Living for today is not a bad philosophy.
For those several weeks we had a glimpse of life if the consultants can get the treatment right. So now its over to them. In the mean time its making the most of what we have. Its hard taking that step back but we have to keep going. Finding a way. You do what you find works for you. Reach out if you need someone to talk to. You are doing your best. That is all you can do. E x