Hello, I am new to this site! I was diagnosed in October 2013 after first getting symptoms at 17 in 2007. I was repeatedly laughed out of the GPs with one doctor saying my shoulder pain was due to how I wore my handbag. It's felt like such a long process. I recently started methotrexate and I am waiting for that to start working. I just feel so lost in it all. I recently got married at 23 and feel like my poor husband is having to take on more and more. We are both teachers and he is an Newly qualified teacher at a secondary school and is often awake at 1 in the morning marking english books. I just feel so guilty that he has to look after me at times too.The other day my flare up was so bad he helped me get in the bath and I couldn't wash my hair or get out without his help. Not what you want i your first year of marriage. I am so tired of being in constant pain. I teach severely autistic children with severe behavioural needs ranging from 5-7 and I love my job and love my children but I really don't think I can do it anymore. I pulled my back last week and all my joints flared up and I have two days off work. My boss suggested that it may impact my temporary position becoming permanent and wasn't sympathetic at all as I have had a few absences in the year i've worked here. I just feel so tired and so down at the moment like there isn't a way out. No one I know seems to understand what it's like especially seen as I am so young and people at work don't seem to believe or realise how much pain i'm in.
I try not to complain in real life so I guess I just needed somewhere to write these fears and annoyance down. I just don't know how it will get any better. My family are dealing with another family member with a terminal illness so I feel even more alone. My husband is amazing I just don;t know what to do next.
Charlotte, welcome again to the PsA forum. No two people experience life and challenges in exactly the same way, but you will find lots of people here who have had similar experiences and challenges to yours, right here. You will discover that there are so many discussion threads that you will be able to relate to. You are definitely not alone!
Would it be possible for you to enlist the help of your GP or your rheumatologist to see what can be done to keep you functional at work until you find what therapy helps your PsA? You may discover, when you find the right medications, that your situation is very different from what it is now.
I don’t have to tell you how fortunate you are to have a partner who is understanding and supportive! And now you have friends here too. I hope it helps.
Welcome, Charlotte! I'm so sorry to hear you're going through so much pain and turmoil. One of the most difficult parts of living with psoriatic arthritis is how unpredictable life gets. Have you spoken with your doctor about additional meds to get you through this flare and help with the pain and inflammation until the methotrexate starts working? I hope you find something that works for you soon. Be gentle with yourself. And your husband sounds like a gem - it's wonderful to have someone you can count on, but difficult to feel badly about needing the help. My husband reminds me that I'd do the same for him and not think anything of it, so I try to just appreciate him all the more. :)
Hi Charlotte, that lost and alone feeling is something that most of us has experienced. Hopefully the members of this forum will help show you that you are not alone and what your feeling is normal. You are on the right track by starting MTX and it will take some time before you hopefully will feel the benefit of it. I don't think its a wise decision to think about giving up work, especially a job you love so much. Once you are on the right treatments and your pain becomes something you can mange you might be thankful to have something to do that you love and that is so rewarding.
It is wonderful that you have a supportive husband and remember one thing, he was with you when you were showing symptoms of PsA and now being diagnosed with it, doesn't change how he feels about you, he loves you and it shows in all he does for you. Don't feel guilty for his help, he wants to do it, if you must feel something, feel appreciation towards him. Ask yourself this, if it was your husband going through this, would you be supportive of him? If you answer yes, then ask yourself why you would support him? I bet your answer is the same as his.
Things are rough for you right now, but they will get better!
Hi Charlotte, welcome. You're not moaning, you're just telling it how it is for you at the moment .... and we all need someone or somewhere to do that. I see you're in the UK as I am ...... one thing you can do is ask for an Occupational Therapist referral, they can help organise practical things like grab rails or lifting aids for getting in/out the bath, advise you on exercises and ways to make movements or do tasks that you find hard. They are also invaluable to have on your side if you are struggling at work. Your GP or rheumy nurse can do you the referral.
Hang on there and give the methotrexate time to work.
You've been given lots of good advice, so I won't repeat. I just wanted to let you know that I can relate to how you feel. I taught for 20 years in FE and for the latter 2 I've been working as a teaching assistant. I was really loving the Job when PsA struck last year. I returned in to start the new term in August, but by early December, it had just become too much. Even though it's not a physical job, as you know, It is full on and you have to be resilient and good humored the whole time. I think that's half the problem, you can't take yourself off for a quiet 5 minutes anywhere. I found myself becoming really emotional and on the verge of tears at the slightest thing. So I've been off for the last couple of months waiting for initial medications to work, but now starting the process towards biologics. I really want to get back to work. My school head and colleagues have been wonderful and I know when I do return they will make every possible accommodation for me. I'm glad you have a supportive partner, I'm very lucky in that respect too. Hope the Mtx helps soon, you certainly have to be patient in this game.
Hello, thank you so much everyone. I've been in tears reading all the lovely things you have said and it feels amazing to know that others out there have the same problems I do. I know so little about what is out there for me and what to do. I do love my job but I just can't keep up physically or emotionally anymore. I also find myself getting emotional over ;little things and my job is quite emotional anyway so you have to be strong. You need so much patience at my job and I can feel myself getting less patient the more pain im in. My children are quite violent and I am constantly handling and lifting them. I provide rebound therapy which is a kind of physiotherapy for my children on a trampoline that encourages communication and I have really felt the affect on my joints today. I feel so much more positive though after reading all your lovely comments. I just can't see how I am going to carry on working full time and getting all my house work done and this is before having a family. I know I will work it out in the end, its just the getting used to it.
It is a border terrier he is called Barney and is lovely. I don't like other people's dogs which is odd. I think Borders are just a lovely breed :) sybil said:
Hi Charlotte,
everything you say will find an echo, a very loud echo, with so many of us. I hope that this site helps you with practical decisions & emotional adjustment the way it has helped me.
I was a teacher in the UK until fairly recently & would advise you to have your union on side. It would be as well to put them in the picture and seek their advice as soon as possible. The school is required by law to make reasonable adjustments to support you and I've heard of some rheumy departments in the UK sending Occupational Therapists to speak to employers to outline how your disease affects you on your behalf. (Apologies if you know all this already).
There's such a strong possibility that your disease will calm down once the drugs start working that it seems a shame to give up a job you love. Employers can 'try it on' I know, but with some objective advice and more awareness of their responsibilities you may well find that their attitude towards you becomes much more appreciative & positive. Every damn thing with this disease is a process - and the beginning of each journey is possibly the hardest time.
(Is that your dog - a border terrier? I was not a 'dog person' until an ancient, dilapidated border terrier cross was abandoned at the school I worked at. He eventually came to live with us & popped his clogs last year - I so miss him.)
Hi Charlotte, if you're struggling with finding the energy for things like housework have a look in your local Thomson Directory or Yellow Pages and see if you can find someone to come in for a couple of hours and do it for you. I got someone when I was just too busy with my business but then when I developed the PsA she became (and still is) my cleaning angel. I have her here for just about 3 hours alternate weeks for £50 a time but most cleaners will come even if you just need someone to blitz once a month and you manage in between. Worth every single penny!
CharlotteWaite90 said:
Hello, thank you so much everyone. I've been in tears reading all the lovely things you have said and it feels amazing to know that others out there have the same problems I do. I know so little about what is out there for me and what to do. I do love my job but I just can't keep up physically or emotionally anymore. I also find myself getting emotional over ;little things and my job is quite emotional anyway so you have to be strong. You need so much patience at my job and I can feel myself getting less patient the more pain im in. My children are quite violent and I am constantly handling and lifting them. I provide rebound therapy which is a kind of physiotherapy for my children on a trampoline that encourages communication and I have really felt the affect on my joints today. I feel so much more positive though after reading all your lovely comments. I just can't see how I am going to carry on working full time and getting all my house work done and this is before having a family. I know I will work it out in the end, its just the getting used to it.