A Bad Day

Lou001

I'm sorry I haven't posted on here for while, and I'm sorry that this is such a negative post, but I really just need to get this off of my chest and "tell" someone how I feel.

I met with a friend for lunch today, she told me she was expecting a baby. I felt so happy for her, but I couldn't help but feel sad that this is something I want and may never get.

Whilst she sat telling me about her future and how great things were for her, all I could think about was I have a disease.
I have a disease and It cannot be cured, only "managed." A disease that is already robbing me of so much. I can hope all I want for a nice, long remission, but the possibility exists that I may never get that. I (and every other sufferer) have to live with this disease every day for the remainder of our lives. Every pain I feel reminds me that I have this disease and that I will always have it and even if I achieve remission, I will still have to take medication for a long time.
It made me realise how different my life is to most normal 29 year old's - normal is gone. Forever.

This made me feel like such a bad friend. I really am happy for my friend, and of course I want her to be happy too. It just made me realise how much I hope for that sort of happiness too.

I'm trying to remain positive, I've been having CBT for anxiety and depression, which has been helping, ive been taking regular yoga classes and swimming, and I've made changes to try and improve my life.
But as my 30th birthday looms, as I think more about how my partner and I want to start a family, I just cant help but feel sad about what my future may not bring.


I have struggled from the very start to accept what is, and I think today is another denial day, and I'm having a pity party for one.
I'm feeling scared of what my life could be like in a few years from now.


Sorry to sound so gloomy. It really is one of those days. X

stickywicket

Lou, we all have bad days and negative days and, when I say 'we', I don't just mean people with arthritis. It's part of being human.

I'm glad you could be glad for your friend's sake even though you dearly wqnt what she has. Again, there are many reasons why people can't have children. Arthritis is only one. Plus, there is life without children and it can be very good. Life is what we make of it im whatever circumstances we find ourselves. It doesn't have to ne bad.

When I was 30 I'd had RA for 15 years. I had two young children. I was in remission during the first pregnancy. The second was absolute nightmare. And the following years were very tough too.

However, I'm writing this from Los Angeles where I'm visiting one son amd grandson. I do it every year. I shall spend Christmas with the other son amd other grandson. I have replaced hips and knees and the other joints are rubbish but I cam honestly say life is good. I hope yours will be too. Jut focus on the positive and you'll be fine. Good luck.

Lou001

Thanks Sticky. I guess I just struggle a lot more now as before PsA I was actually a positive person and was fortunate enough to have very little bad days.
Positive attitude certainly helps. Last night was a blip.
I've cleared my head and given myself a shake.

mig

Morning Lou,I didn't realise you are so young ,big granny hugs coming your way,I thank all the gods I didn't get RA till I was in my 60s by that time my children were off hand.Life is a fickle partner it will do what it wants when it wants the trick is not to let it get to you,sounds like you're kicking it in to touch.
We have a cyber coven over on chit chat what with it being nearly Halloween we are ready to get the cauldron bubbling so come over and chuck something in ,it's fun and we have a laugh . Mig

Slosh

It must have been hard listening to your friend, I had a similar experience for different reasons many years ago as my first two babies were still born prematurely and although I did have a successful third pregnancy, even though the odds were against this, I had got to the stage of considering the possibility of not having my own children. My daughter is 23 and coming to terms with a diagnosis of ME so I also have some understanding of the frustrations of life as a younger adult, although others on here will know that first hand.

It's only human to feel angry and upset and good to acknowledge those feelings. I'm glad to hear you are having some CBT but have you also considered some counselling to help you explore your feelings in a "safe place"? I had some earlier this year and it was a great help.

Just remember that on here we can all empathise with how you are feeling and it dies help to "talk".

I do hope you have a better day emotionally and that physically an effective management regime can be found for you.

bubbadog

Lou, I wanted to post this because I know exactly how you feel. I had to have a full hysterectomy when I was in my mid-twenties, it was an emergency operation and I had literally a week to come to terms with it. And then a few years later I had the bombshell that I had Osteoporosis and then a few years later told I had R.A in some joints as well! I have friends & family who have young babies or pregnant feel they shouldn't come to visit me because 'it will only upset me' seeing them pregnant or with a young baby! That's what hurts me, the fact they think they have to walk on eggshells around me. Yes it makes me upset that I can't have children. The fact we thought I was pregnant when the Endometriosis was found was very upsetting but I have to carry on living. I have to furry babies now (young cats) and they are nicknamed 'The Kids', they are super spoilt and I love them with all my heart. Yes it does take time to come to terms with the fact you can't have children. It doesn't help when family & friends feel they can't come to visit with babies like I'm dealing with at the moment my niece feels she can't bring her baby round to visit because it 'my send me over the edge!' but you must take it day by day. I'm here if you need to talk.

theresak

Lou, I'm so sorry you are feeling so low - it truly happens to all of us. You are having CBT, exercise etc.,so you are taking positive steps. We all need to get things off our chest from time to time, and where better to do it than here, amongst people who understand?

RA is an insidious disease, creeping into all aspects of our lives, and affecting so much more than our joints. Please be kind to yourself, and come and 'talk'to us whenever you feel the need.

Take care.

daffy2

I guess I just struggle a lot more now as before PsA I was actually a positive person and was fortunate enough to have very little bad days.

You have a lot to come to terms with and if your life experience prior to this illness has been of things going as they should that makes it even harder sometimes. For someone like me,prone to the Eeyore view of life, it doesn't come as such a shock to the system!
It sounds as if you are actually managing very well and taking an active part in dealing with your disease, but as Sticky says it's only human to have down times. Most of the time I imagine you fall into the 'I have arthritis, arthritis does not have me' camp, but there will be inevitably be occasions when it flips the other way. It's not the fact it happens that matters, it's the way it's dealt with that does, and it seems to me that you do that well.
Keep posting - we can't fix it for you, but there are folks here who know exactly what you are going through and can offer support, as the previous posts show.

Boomer13

Hi Lou;

I have PsA too. Mine so far has been pretty resistant to medication. I can really relate to your post and sometimes just thinking in a positive way isn't enough so I'm glad to hear you have counseling/CBT available to you. I was a very busy, busy person with spouse, career and hobbies. Then, I succumbed to PsA full-on and everything changed, except my spouse. He's hung in there with me, somewhat surprisingly.

I don't have children. I focused on career and then married a person who wasn't sure he wanted kids. Now, I have neither career nor kids but I do have some furry dog/cat companions in the house which helps. My husband has psoriasis in his family too which we just found out recently, so I am relieved we didn't have kids now. They would have had a double whammy of psoriasis genes. I try not to think about it much now and seeing what parents go through, I'm not sure I would've managed well with my version of PsA anyway.

I find it hard relating to friends and their busy lives. I guess it's only natural for them to try to include me in things but honestly it makes me feel worse sometimes because I'm always saying "no, I can't do that". I genuinely think people who haven't had a taste of chronic illness in their lives cannot comprehend what it is like and will gravitate to thinking that: I must not be trying, or I just need to get out more. Basically, a psychological explanation for what's wrong. I get tired of talking about how rough things are for me and, listening to all their goals and plans is painful emotionally. I just don't have the energy for it, so will leave an outing feeling drained. It's become a fairly isolated existence. I've come to terms with that and, I do so because I just can't spare the energy for a lot of socializing. I do have some friends that are in the illness realm too, so at least we can get together and be empathetic, supportive and most importantly, have some fun. I also have a terrific spouse who is very supportive in lots of ways.

I guess what I'm trying to say is sometimes socializing with folks that can't understand can be emotionally very hard and, it's best for me anyway, not to do it too often and then only for very short periods. I wish I could say the really tough days like you've described get less frequent but they haven't for me. You just have to ride them through and start over the next day. It's hard and I'm sorry you are having a rough time.

Hoping you have better days ahead, and can find a strategy for yourself for socializing and not having the depressing/draining after-effects.

Take care of yourself.
Anna

emmaadams

hi Lou me and my husband have been going through a very similar thing. we do have 2 boys Lewis 9 and Riley 5 . i turned 31 this year and got diagnosed with OA in both knees, hips and lower back in May this year . I have been wanting another child for several years now and with everything that i am going through and all the high dose pain meds ect
we have decided to put off having another baby indefinitely.

i dont think ill be able to cope with the added extra weight gain,stress,and pain of the child birth as well as coping with OA, that's without all the heart problems i had whilst carrying my boys too . then there's all the lifting and early morning/late night feeds , as well as all the running around when they start walking and you have to have eyes in the back of your head ..

for me its still hard to come to terms with it as i WANT another child . but physically, mentally and emotionally its just not possible for me . i am incredibly lucky and i love my boys millions but i still keep thinking maybe in a few years when the OA settles down ill be able to try then. but because of my age i don't realistically want to be having a baby at the age of 35/40 ....

i empathise with you and i can see why you feel envious of your friend. it is ok to feel like that .we all go through tough times in our life

you never know maybe in a couple of years/months you might go in to remission and be able to have the child you want and if /when you do i think you will make a wonderful mother xxxx


i do hope you feel better today

Emma xxx

Lou001

Thank you all so much for your replies, i am truly overwhelmed by your kind supportive words. Your really are such wonderful people.

Slosh, I am so sorry for your losses. I was so happy to read you were blessed with your daughter after after losing your first two babies.

oh Bubbadog, I am also so very sorry to hear about your loss. It must've been very tough to come to terms with.
I understand how you feel in terms of other people and their children.
Although my situation is different, I get the parents and siblings making comments about starting a family, especially my mum who keeps mentioning grandchildren.
Both my partner and I have a twin, my twin brother has 3 children and my partners twin sister also has 3 children.
Being the same age as our siblings, people have a habit of making comparisons!

Although I haven't been told I can't have children, the Rheumatolgist did say that my fertility may be affected if i'm having a flare.

I currently have a contraceptive implant which expires in April 2016, at which point we plan to have this removed and hopefully try to start our family.
We have discussed getting this removed now and trying sooner rather than later, however I've gained weight recently (a lot of unhealthy emotional eating) and I want to try and shift this for the sake of my joints and to be as "healthy" as possible for a potential pregnancy.

All of the literature I have so far read about PsA and pregnancy suggests its possible, but I'm starting to think that its based on an ideal case whereby the condition is in remission and you are practically pain free.

Who knows what will happen. I am going to try and remain as positive as I can, and in the meantime continue spoiling my own fur babies

PS - I LOVE that other people have "fur babies" I have two.! My lovely cats Amber & Maisy. They are the sweetest things and they are a part of our family.

stickywicket

Well done, Lou! Anyone can be positive when times are good. Achieving it when times are bad is the way to strength and courage.

If you're thinking of trying for a baby do have a chat first with your rheumatologist as you'll probably need to change your meds. I think, these days, steroids are the preferred option.

LignumVitae

Hi Lo
I just wanted to say do remain positive. You never know what is to come. I was 30 in 2009. At the beginning of 2011 I left a rubbish relationship. At the end of 2011 I got engaged. In 2012 I got married and withdrew off my meds becoming pregnant in the summer (the withdrawal was done with plenty of steroid shots to keep me going). In April 2013 I became the lucky mum of two beautiful little girls and though sometimes being an arthritic mum is very hard it's also amazing. Be gentle and kind to yourself. It's fine to feel that frustration when you hear others doing well and getting what you want, they probably feel it about some aspect of your life too. If you had told me in 2009 all that was to come in my life I would never have thought it possible, likely or true and yet here I am, enjoying s moment of peace whilst my little beautifuls take a nap. LV

Lou001

LV Thank you so much for sharing such a positive story.
A big congratulation on your little girls.

Both my partner & I are twins, I wonder if this increases our chances of having them ourselves! I hope we are lucky enough to have one, two would be a blessing.

Lou x

loopylou

Oh Lou i'm going thru this at the moment, last Oct I had an appointment with the rheummy and discussed the fact that me and my boyfriend r planning on getting married and r wanting to start a family so I of course needed to b off the mtx we started reducing by Feb this yr I was on 4 a wk plus 2 sulpha a day, in may I had a flare up of my foot still in the midst of it now recently bin to another appointment where of course my flare up was discussed i'm now back up to 6 mtx a wk and 4 sulpha a day in a couple of months I'll b going again. I'm now going thru a bit of a grieving period as I've come to the conclusion I won't off meds therefore won't b able to become pregnant. The rheummy did say about coming off mtx again and going full dose of sulpha then when I flare up have steroids but who wants to wait til their in pain! So I fully understand where ur coming from