Really Really Low

jcp123

Sorry that my posts always seem to be full of woe is me and self pity but I can't stop crying today.

I've managed to drag myself to work but wish I had stayed at home.

I'm due to see the Consultant on Wednesday again but it will just be the usual story, lets just up your Methotrexate and see where we get! I've been on Methotrexate (Tablets and Injextions), Humira, Rituximab, Sulphsalsine, Leflunomide and been refused funding for another biologic so its back to Methotrexate, which didn't work in the 1st place!! All he ever says is "Well Joanne, Psoriatic Arthritis is very difficult to treat!"

My hair is coming out, I used to have gorgeous thick curly hair, now its just thin with no curl at all and it comes out in clumps when I wash my hair!

The first thing my little boy (3) says to me in the mornings is "Are you poorly today Mummy?" Which just breaks my heart......I can't be the proper Mummy that I want to be becasue of this stupid Arthur!!

I think I might ask the Consultant for a sick note as that seems to be his answer to everything, I think some time away from work would do me good, I just can't manage at the moment.

Husband is not the most sympathetic person in the world which really hurts at times, he just thinks a bum full of steroids is the answer to my problems, which it is in the short term! lol!

Sorry for the big moan xxxxx

frogmorton

Hi JCP

your little boy sounds lovely....what a sweetie - at least he will grow up with empathy.

I am so sorry the meds arent solving the PA for you and i do wish I had an answer to help. I can give you my sympathy though - you are a good Mummy you know....shows because your son sounds so kind.....

lots of Mums who have their health dont have such nice kids.

A bit of time off might be an idea so at least you can rest a bit. do you get sick pay from your employer though?

Ohs can be a bit 'head in the sandy' about arthritis cant they?

Maybe you can have a little jab too - while you are at it :?:

Take care

Love

Toni xx

ailsamary

hugssssssssss you moan all you want sweets, this is the right place for it, and most will be very understanding, sometimes we need that cry, doesnt make you a bad person

marion1952

Hi JCP

Really sorry to hear things are not good for you at the moment - sounds like a bit of time away from work would be a good thing..

It's not your fault you have this illness and I' have no doubt whatsoever that you're a terrific Mum..

I find the total lack of understanding by other people very hurtful too.. I think everyone should experience arthritis for a week and see how they cope with it!

from Marion x

frogmorton

marion1952 wrote:

Hi JCP

Really sorry to hear things are not good for you at the moment - sounds like a bit of time away from work would be a good thing..

It's not your fault you have this illness and I' have no doubt whatsoever that you're a terrific Mum..

I find the total lack of understanding by other people very hurtful too.. I think everyone should experience arthritis for a week and see how they cope with it!

from Marion x

But during that week they have to think it's forever!

Love

toni xx

pols090607

Just wanted to offer some support your way, I'm a Mum of two little ones (6 and 2) and it feels so much harder dealing with the pain as you just have to get on with it and rest it something we just dream about.

A few weeks back, everything got on top of me and I went to my GP in a right state, cried my eyes out and said I just couldn't cope with it all, I felt like I'd reached meltdown !

I was signed off for a fortnight which in itself took great strain off me as the worry of how much pain I would be in of a morning and trying to get to work, see to kids etc, etc had lifted. Perhaps that's what you need Joanne, a little break away from the usual day to day stuff, go see your GP.

I am waiting on an answer from DWP for DLA, prob won't get it but it would take huge financial strain from me and enable me to give up my job for a while until my children are both full time and I could find something that fitted in around us all without the manicness and very stiff mornings, I'm trying not to thnk about this too much though

Big Hugs and keep us posted (oh and moan away, that's why we're all here, we're all in the same boat love xx)

lindalegs

Hi Joanne,

You cry girl, that's what you need to do. I'm so sorry that you're feeling low. When you see your Rheumy on Wednesday tell him how low you feel and how difficult it is for you to cope ....don't hide it from him. I can remember breaking down in tears in front of my Rheumy when my boys were little and I was at a particularly low ebb.

A rest from work is a good idea.

Your OH thinks a steroid jab is the answer to all ills my hubby thinks that a cup of coffee cures everything from a cold to arthritis to labour pains (I think they resort to their remedies when they don't know how else they can help us )

Hope you feel better soon.

Luv Legs

dippydoodah

im sorry to hear you're going through such a rough time. i agree with others, if you're able to have a little time off work it may do you some good even if its just to rest a bit.

you sound like a fab mum, as you're son sounds like a little sweetheart and he must only be that way if you've tought him to be so. i am a mum to 3 boys ages 9 5 and 3 and they all understand mummy has sore bones. my youngest asked me if my arms are hurting today. i just tell him i just need gentle hugs now and then. ive been honest with my boys about my arthritis and they're so helpful sometimes - my youngest likes helping me with the washing putting it all into the machine which is great for me as i can't bend too well.

unfortunately there are some people who dont understand how bad arthur can be. my dad used to think it could be sorted with a 'bit of exercise' but ive explained to him since.

im sorry im not much help but just wanted to show my support

caroline x

speedalong

frogmorton wrote:

Hi JCP

your little boy sounds lovely....what a sweetie - at least he will grow up with empathy.

I am so sorry the meds arent solving the PA for you and i do wish I had an answer to help. I can give you my sympathy though - you are a good Mummy you know....shows because your son sounds so kind.....

lots of Mums who have their health dont have such nice kids.

A bit of time off might be an idea so at least you can rest a bit. do you get sick pay from your employer though?

Ohs can be a bit 'head in the sandy' about arthritis cant they?

Maybe you can have a little jab too - while you are at it :?:

Take care

Love

Toni xx

Hi JCP

I think Toni has said what I would say. Just sending you some (((hugs)))) - be kind on yourself.

Speedalong

ironic

Hi Joanne,

Please do as the others have suggested and tell your consultant how you feel. No wonder you are so down. Hair loss on top of everything eles is awful for you.

If you can have the time off, I think it might help.

Look after yourself, Lv, Ix

dopeykit

Hi JCP,

I've just posted about the same thing - although I'm just starting to get to grips with PA. I really feel for you, its so frustrating feeling that the doctors can't help and I don't know what we're supposed to do. Can't say anything much more constructive at the moment but I'm thinking of you and hope you feel a little brighter tomorrow.

kit

jcp123

Thank you all for your lovely words, you made me cry even more! :oops:

I came home from work tonight to a letter postponing my Rheumy appointment on Wednesday to the 11th August!!!!! :shock:

I'm going to phone in the morning and tell them thats not acceptable as that will be 6 months since I've seen him, or at least see if I can get in with the nurse specialists who are fab!

Oh well, off to bed for me now little one is asleep!

Good night all and thank you again xxx

Wonkylegs

jcp123 wrote:

Thank you all for your lovely words, you made me cry even more! :oops:

I came home from work tonight to a letter postponing my Rheumy appointment on Wednesday to the 11th August!!!!! :shock:

I'm going to phone in the morning and tell them thats not acceptable as that will be 6 months since I've seen him, or at least see if I can get in with the nurse specialists who are fab!

Oh well, off to bed for me now little one is asleep!

Good night all and thank you again xxx

so sorry that the appointment has been put back - sadly not unusual these days it seems :roll: - but maybe if you ring up and say honestly how you are feeleing then the rhuemy nurses may be more willing to listen and give you the support you obviously need.

do take the good advice others have given you about taking time off if you can ..... I know from bitter experience that keeping going doesn't do us any good when our bodies are telling us to rest.

as for your little one - what a love to ask you such a sensitive question. many mums would be desperate for one who thought about them like yours does

loads of hugs and I hope you have a good sleep tonight
hugs
WOnky xx

page35

Hi jcp
sorry you arent to good at the mo
i have a 3 yr old daughter that asks me every day if i have taken my tablets and she gives me "injections" with her doctors kit cos she says that will make me better im also a needle phobe but she doesnt know that

your not alone and for me it sometimes helps to know that, although i wouldnt wish this on anyone, well maybe one or two
hope you can get to see your rhuemy or nurse aug is to long to wait.
best wishes
sharon

skezier

Hi Joanne,

I think as well that they can't leave you that long to be seen by the rumo. I really hope phoning has meant they will see you sooner.

I also think a bit of time off work would help and so wish I knew what to suggest to help you with the hair loss as that must be so hard to have.

Leaving you a ((( ))) and a hope you are feeling a bit better today. Cris x

frogmorton

Hi JCP

Hope you got your apt sorted - just NOt what you neede eh?

Grrr!!!

Hope today has been a better one for you

Love

Toni xx

jcp123

Hello All!

Today has not been too bad all in all, am waiting for the nurse specialist to phone me back with an appointment to see her so hopefully should get to see her next week, she can sign me off to so I'll have a chat to her about that.

I'm also seeing the surgeon next week for my pre op assesment for my shoulder, have got to have some of the bone shaved off and the tendons repaired on the 15th June (Can't remember the name of whats wrong with my shoulder!) I'm just hoping that they will put me to sleep for it!

Just going to take my tablets and then have a read in bed.

Thank you again for your lovely words and gentle hugs to you all.

Love Jo xxx

dopeykit

Hi Jo,

That's great you are going to see the rheummy nurse. They are always sooo much more useful than the docs I think Glad you are feeling a bit better - I had a bit of a thought about the hair loss, have you tried upping the amount of protein you are eating and taking high strength b vitamins? It might help...

Have a good read!

Kit

clarelouise1

AAw I know exactly how you feel, I have RA but struggling getting proper treatment, I have a four year old son who like you keeps askign me when I will get better and it just makes me want to cry. Why do you not qualify for biologics? They are thinking of putting me on them cos Ive tried mtx, sulpha, hydroxy etc but its not controlling it. I'm really struggling as I am recently divorced and sole carer to my son whilst workign full time! What are you doing for hair loss? I struggle with that too, its so upsetting isn't it. I have tried folic acid and vivsascal but don't seem to be getting anywhere, when I wash my hair like you clumps come out. As if the Arthriritis isn't bad enough eh. I would go back to your consultant and just say you can't cope like this and need some more help.

I really hope you start to feel a bit brighter x

jcp123 wrote:

Sorry that my posts always seem to be full of woe is me and self pity but I can't stop crying today.

I've managed to drag myself to work but wish I had stayed at home.

I'm due to see the Consultant on Wednesday again but it will just be the usual story, lets just up your Methotrexate and see where we get! I've been on Methotrexate (Tablets and Injextions), Humira, Rituximab, Sulphsalsine, Leflunomide and been refused funding for another biologic so its back to Methotrexate, which didn't work in the 1st place!! All he ever says is "Well Joanne, Psoriatic Arthritis is very difficult to treat!"

My hair is coming out, I used to have gorgeous thick curly hair, now its just thin with no curl at all and it comes out in clumps when I wash my hair!

The first thing my little boy (3) says to me in the mornings is "Are you poorly today Mummy?" Which just breaks my heart......I can't be the proper Mummy that I want to be becasue of this stupid Arthur!!

I think I might ask the Consultant for a sick note as that seems to be his answer to everything, I think some time away from work would do me good, I just can't manage at the moment.

Husband is not the most sympathetic person in the world which really hurts at times, he just thinks a bum full of steroids is the answer to my problems, which it is in the short term! lol!

Sorry for the big moan xxxxx

ironic

Next week is going to be a busy week for you. Lets hope you find things moving forward for you.

Good luck with the shoulder, when that is done you should get some relief.

Lv, Ix

tillytop

Hi JCP - So sorry you are having such a rough time and finding it so hard to cope at the moment. I can't add anything to what the others have said - but I agree totally with them that you obviously have a wonderful little boy and you should (as I am sure you are) be really proud of him! Thinking of you. Love Tilly x

kmt297

Hi JCP,
Seems like we are in a similar position, I also have PSA and having tried all of the biologics I am waiting for something new to appear out of thin air. I am taking MTX and humira and they don't work brilliantly but they do have some effect as I found when I stopped it all. I sympathise with your situation with the Rheumy appt too - it happened to me but I got so angry I complained - via email on the hosp website. They have to investigate if you do. I said that the Dr wanted to see me in 3 months but the appt they sent out was for 8 months and that wasn't good enough. Someone from Mgment called me 2 days later and advised me she would arrange for Nurse Specialist to call and get my appt moved forward. In the end it was only about 3 weeks late. I encourage you to complain or contact the hospital PALS service for help - and call the nurses if you have that option! I hope you're having a better day.
KT

dreamdaisy

Hi. I too have PA and it's tough going at the best of times. I hope your husband is being a little more sympathetic - have you googled The Spoon Theory? It's a very graphic way of explaining how you feel and how the arthritis affects you. I hope things are brighter today for you. Dreamdaisy

suncatcher

You took me back a while there. My son has grown up with my arther. He was six months old when arther happened. I remember he was under two when he saw his mommy me struggle to carry a pile of towels up stairs. He held up his arms and went on tip toe and supported the load all the way up stairs with me. I knew then we would be a special little fellow. A lady said to me who had arther all her life not had kids. "You will be alright because you have that liitle one to get you up in the morning". "even though you sometimes wont want to get up at all"." you have to keep going couse of your child and that will see you through". She was so right.

I know things are bad but concentrate on positives your little one anything as it will get you through. No its not easy and i still have days. Keep going. Ive tried loads drugs and now ones working for me. They will find one for you im sure. I hope you have good support family gp hospital friends etc These will help . dont give in keep going. Keep sharing on here as bottleing it up wont help. You will get loads support on here. I send you hugs and my best wishes we are here for you from joanne

jcp123

Hello All,

Thank you again for all your lovely words of support.

I've managed to get in to see the Nurse Specialist on Thursday so I've just got to get through till then

Had a really good meeting with the Occupational Health Manager at work on Friday,she was hugely supportive and very knowledgeable about Arthur and even suggested I have a look at this website!

They are getting a Disabilty Employment Advisor in to see what else they can do to help and have also said that any Arthur related time off sick will not go against me on my record.

Have had a lovely day out with DH and Luke, we took him to Haworth in Yorkshire on the steam train and he loved it, I'll pay for it tomorrow mind as there was a fair bit of walking involved but it was worth it!

Anyway hope you all have a lovely and painfree Bank Holiday weekend and love to you all.

Love Jo xxx

fightingback

I can understand you wanting to cry and cry! I did that recently when I was first diagnosed with osteoarthritis in both knees. I am meant to be getting married what a start to married life!

I decided to go and get anti-depressants. I know they are not the answer but they chill you out so you can think clearly and stop crying.

I also got a sick note so I could get my head straight. My advice is not to go to work (if you are covered with sick pay) if you are like that as you won't be able to work effectively.

Needs must sometimes - we have to give ourselves time and tlc. You will feel better soon I promise. You sound a strong lady. Being strong means sometimes admitting defeat and really looking after yourself as you would a cherished friend.

Lots of hugs, Fightingback xxx