Wow, PSA. Although I am pleased to find out what is wrong with me, in some respects I wished I hadn’t!. Sometimes, the Physical problems can be sorted for a spell with a tablet. If only the Emotional side of this could be so easily fixed!!.
Just after my mother died I noticed that I was tired quite a lot. Maybe drained is a better word. Couldn’t put my finger on it but just thought it would get better. I started getting a lot of pain in my left foot, then I started to feel like a bit of a stalker to my doctor - I even joked to him that I felt like one. Every month I was there with something else. After being there for a variety of different reasons over the next few months, I eventually got a referral to a podiatrist. After a couple of sessions my podiatrist noticed I had the start of dactilitis in my toe. By the time my referral for my Rheumatologist came through, I could barely move. Everywhere from my shoulders to my back, right down to my toes hurt constantly. The pain was like nothing I had felt before. Naxproxen and codine was doing what it could but it was too much for that to be able to cope with. My Rhumatologist was pretty much able to diagnose me straight away. A massive steroid shot to let me walk was given and a prescription for methatrexate and folic acid. The next couple of weeks were glorious as I could function! normal tasks like sitting on the toilet or walking down stairs were not a painful chore anymore !!
As much as the physical aspects were starting to be taken care of, the emotional side of dealing with the disease is a lot harder to come to terms with.
The words “there is no cure, you will just have to manage it as best you can” resonated through my mind all the time. Not being able to do “normal tasks” that everyone else takes for granted has been extremely hard to deal with. Unless someone has experienced the difficulties you face with PSA, you can’t make them understand. This is where the frustration sets in. Not being able to go for long walks, not being able to wear heels, Not being able to sit in restaurants for a long time, being in unbearable pain every time you get up off the sofa, being in pain for doing too much, being in pain for doing too little !, not being able to bend down to get something out the back of the fridge, finding getting downstairs really difficult. The list really is endless. This also includes the bouts of fatigue. I’m sure my husband just thinks I am lazy, but sometimes its so bad, and every muscle is pulling, I could just lay down on the floor and curl up there quite happily !!!.
Trying to juggle a full time jobs and also run a home can easily overrun me nowadays.
Whilst my brain is trying to deal with all the above emotional baggage, I also have the other part of my brain now kicking into say “stop feeling sorry for yourself!” There are lot of people with worse problems so just sort yourself out!. I am at the point now where I need to get out of the stroppy Teenager mode of " I don’t want to take tablets for the rest of my life" to actually try and be adult about it, deal with it and try to manage my life better. This means better diet, pushing myself to have a regular exercise routine and trying to get more support where I can with getting things done round the house. I have set myself some goals to achieve with a view to losing weight and strengthening my muscles back to their normal level. Will I do it? Who knows, all I can do is accept where I am now, know where I want to be and what I have to do to get there. From what I have seen so far, there is a lot of support on here from people going through the same types of problems as me. At least I know I am not alone in trying to deal with this! I will update my blog every week with how I am getting on. Good luck to everyone out there with the same battles !! x
I hit "like" just because I can so relate, as I'm sure most people with PsA can! I also felt the same emotionally when the doctor gave me the Dx. It is very depressing news. I, like you, kept telling myself there were so many worse diseases, but somehow I couldn't get past the extreme anxiety and sadness I felt. And I always tried to put on a happy face--nobody at work had a clue what I was going through, up until recently.
Idk how old you are--I'm lucky because even though I had psoriasis for 40 years, the PsA was slow and really didn't get diagnosed until 6 years ago--and even then my rheumy thought the disease would slowly progress. It wasn't until 2 years ago that it started speeding up and making me feel more sick. Idk if you take a biologic yet, but starting Enbrel was a life-changing event for me. I'm not depressed or anxious anymore. I don't like having PsA, but I feel "cured". I feel like the worst is over--even though I do know it isn't 100% certain Enbrel will work forever. But there really isn't any certainty about anything--except death and taxes, so I try to tell myself to not worry about that.
Hopefully, you will eventually--and sooner rather than later--find the "thing" that helps put you in a happier place!
It's really rough when you're at the beginning of the battle, and things are not yet under good control. It really is a grieving process, learning that you have a chronic disease. I was diagnosed 7 years ago, and was hit with fatigue and pain really hard. It's taken time to learn how to deal with it. Finding the right meds can be a process, but it's well worth your time to keep working at this.
Thanks for your comments, Grandma J I am 36. I am not on anything else yet as the methotrexate has been working well so far. I have a follow up with my rheumatologist next week so we will see what is happening then. By the sounds of it, I still have a way to go before I am near the top level of the drug to consider adding something else in. However I must start getting into a proper routine to help myself too! It’s easier to feel sorry for yourself and grab a bag of maltesers than it is to get up and exercise !
Wendy- I was 36 when I was diagnosed. When I was struggling with fatigue, even taking a walk was a really big struggle, and my kids were 5 and almost 1 yr old when I was diagnosed. The fatigue is still present, but takes a smaller role now. My 12 year old and I ran a 5k yesterday, if that gives you a clue on how far I've come. And then, yes, I took a 2 hour nap.
Wow Stoney, that’s great news well done!! Thanks, that gives me a lot of motivation to know I can do it. It’s sometimes better hearing it from someone who has been there and done it!
Wendy--thanks for your post. It is so hard at the beginning, but like Stoney can attest things do get better. I LOVE wearing heels and I still wear them on occasion. But I looked at the inability to wear heels every day as an opportunity to shop for really cute flats and wedges. Every cloud and all that!!
Know that you're right about all the things you're thinking, from the petulant "I don't want to take my meds" to the Malteasers and not wanting to exercise. It is a MASSIVE adjustment. It went to see a therapist for several months to cope with the changes in my life and to get some help coming up with strategies to deal with the pain and fatigue (other than retreating to bed). It was really helpful (and non-fattening).
Hi Janeatiu, I am usually really good at dealing with difficult and emotional situations but I have found this really difficult to accept and start dealing with, especially as before now I had no one To talk to that had been in the same position. I’m glad you have got the support you needed to help move forward and I am feeling a lot more positive about my future now too
I'm glad you're here, Wendy! You did a very good job of explaining the disease which we all have to some degree. Hearing about young people like you having to deal with all the physical and emotional pain is so sad. But, like my mom would say, we all have a cross to carry. Your more recent comments sound like you are already doing better! If your pain starts coming back, don't do a wait and see if it resolves itself. It most likely won't--I tried all the so-called natural remedies out there and nothing worked. The only natural "pill" I take every day is CoQ10, and my rheumy told me there is some evidence that it can be helpful.
Our oldest child is just a year younger than you. I would be so sad if he or any of our other kids or grandkids get psoriasis or PsA. He and a daughter and 3 yr old granddaughter all have had skin lesions of some sort, so there's a real good chance they will end up with it. Plus, it not only comes from my genes, but my husbands dad and brother had psoriasis too.
Your discussion was very well-written! Thank you for sharing, and I look forward to your weekly updates!
i love this so much it feels like your in my head!! i really hope you feel better soonxx