Wow...I can't remember ever being this down for this long before. I'm getting a little better but not enough. Adding the Advil to the mix has definitely helped a lot. The one day I forgot a dose of Advil was a harsh reminder of the pain. How the heck did I ever get through a day with that much pain.
I can't talk to my family. They don't get it and haven't bothered to read the information that I have given them. Then when they ask me questions the arthritis I get very frustrated because if they had read it they would know. It gets overwhelming being at work every day and then coming home to try and do all the things that need to be done. in some ways work is all I've got. My son is a little better now with helping me but he has his own life. I can do some housework but have trouble doing too much, especially vacuuming. I don't cook anymore because I can't hold a knife very well to prepare and cook the things I want. I used to cook every weekend so I would have left overs through the week. Now some days I struggle to find anything I actually want to eat. I could get some more gadgets but they can't cut the way I would necessarily want. Next, I need a juicer. I've been shopping for one.
I'm feeling very secluded because I get tired and don't want to be out a lot of the time.
Hang in there Dini. See if there are things you can do to help yourself. Many supermarkets stock precut fresh veggies and a meat department will always chop things for you if you need. It is hard to feel supported when no one gets your disease. So try making time to support yourself. You have to take care of you. Thinking of you.
You could go on … but Dini, no need. We get the drift, oh, do we ever. I’m so sorry it’s like this right now. You are going through a terrible phase of struggling with an obscure disease that just won’t let go. There’s the pain, and then there’s the depression. And we all know how difficult it is for others to get it: they don’t/can’t/won’t and that just compounds your feeling of being alone with this. If you had an unidentified lump awaiting diagnosis or a limb in plaster, you’d be getting cards, phone calls and casseroles. And in the meanwhile,you’d know that in the long run, you’ll probably be just fine. But, unfortunately, it’s not like that when you have PsA.
Things will get better. You’re going for an expert second opinion in a month or so, aren’t you? You are strong. You can hang on until then. I know you can. Focus on what you can do for now, and keep taking that Advil. Set an alarm on your phone if you need to, so that you don’t forget.
Can you get to see your GP for some stronger pain relief to get you through this flare? (I had good success with the sustained release tramadol when I was waiting for my THR.)
Sending you gentle cyber hugs. I wish I could drop by your place to bring you some flowers and a big pot of soup.
So sorry you’re going through such a tough time Dini, sometimes it easy to believe that we are alone, cos that’s how it feels…can you minimise some of the chores like shopping by doing it online? When I am in the worst of a flare I do nearly all my food shopping online then get it delivered. Just get the fresh stuff myself. I find it increasingly hard to tackle crowded shops and it seems to exhaust me, so its the internet for me!
My sons never really talk about my PsA or understand it much but they do help out with various chores…vacuuming! hurts my shoulders like crazy so most of that is done by my youngest.
Cooking is a hard one when your hands are bad, I tend to use my slow cooker alot then. Tell my boys its a “hearty stew” night which means its all big, baby new pots go in as well whole with skin on. I make a whole pot so I can pop individual portions in the freezer.
Where possible I use scissors instead of a knife in the kitchen that way it saves my hands.
Hang in there Dini, thinking of you x
Hugs, Dini! It's difficult to not have support at home. It's a difficult thing for us and for our families to come to terms with. We are supposed to be super-mom, after all! PsA isn't an in-your-face type of disease for those in our households - my husband admits to forgetting I have PsA sometimes just because I look and act so "normal" most of the time. It really hit all my family members when I ended up in a wheelchair. Something that helped me a lot was to call a family meeting and lay it all on the table. Our system of doing housework was revamped, the expectations from my husband and kids as to meal preparation were made higher, etc. etc. etc.
Finding ways to work around our health issues is key. My favorite meals these days are the easy ones - and my five year old could make most of them ... for example: boneless chicken breasts in the crockpot with a bottle of Italian dressing poured over them, fingerling potatoes tossed with garlic, ground rosemary, and olive oil and oven roasted along with carrots (you can use baby carrots), squash, or whatever other veggie I feel like - no cutting needed. :) I usually make extra and use leftover chicken for chicken salad for lunch, or throw some sauce and cheese on it and serve it with pasta the next night.
Maybe a slow cooker should be on my list, I don't have one. I told my son I need more frequent help and am planning on having a discussion on housework. The house starts to make me crazy when things aren't done. Pre-cut veggies are a great idea. I have made many changes to put less stress on myself, even need my son to help me make the bed. I just can't get the sheets tucked with these fingers.
I agree, people don't see the effect on me and that's why they don't get it.
Super mom....ya that's my problem because that's what I have always been and expected of myself. I have to let it go.
On Remembrance Day, think about the people who sacrificed so much so that we could live in the society we do, with the freedoms we have and privileges we do. Your being at that very special clinic is, in a way, a tribute to them.
And on the 11th, I'll be thinking of you. Meanwhile, tomorrow, you can think of me, as that is where I will be!