Ok.. so I haven’t left the house now for nearly 3 weeks.. been sick off work as I am in terrible pain. I had my first Toci infusion and my neck and shoulders flared up so bad after I can’t move! My husband called 111 on Saturday and they sent the paramedics round who were brilliant of course! Morphine increased to make me comfortable.. now I’m scared as I have my next infusion tomorrow and is it going to make it even worse? The hospital have been useless.. helpline told me to put a f***ing hot water bottle on my neck and take paracetamol. This was the same nurse that was counselling me for the wrong infusion and wrong dose of azathioprine! My boss has dropped my lap top off at my house (no pressure at all) and I can’t even take my boys to school. Im at my wits end and can’t stop crying.. my moms told me to pull myself together! I’m sure many of you have been here before so how on earth have you pulled yourselves out of this hole please? Sarah xx
Cabin Fever: Ok.. so I haven’t left the house now for... - NRAS
Cabin Fever
Sarah your mum was so wrong and you do what helps you. If your not well enough to have the infusion don't have it ring and cancel and tell them why you can't make it unless they are going to admit you for the pain darling. Thats just my point of view. Hugs darling.xxx
Thanks Sylvi.. I’m in a quandary as I’m not sure whether the infusion caused the flare or whether it was going to happen anyway. The hospital messed me about so I went 8 weeks with nothing. As for my mom she’s good help on a practical level but forget it emotionally. Thanks for you reply. Sarah xx
Hi Sarah, Your mum's comment is just typical of those who don't understand how RA feels. Very frustrating we know! Do you have a carer's service at all ? Maybe to help with your kids, housework and you until your feeling better? Unfortunately RA only gets worse with stress and overdoing things when in pain and/or a flare. Yes, if a hot water bottle was the answer to our pains how fabulous that would be! Your emotions sound like they are running high and I understand why! No pressure indeed! A box of chocolates and some flowers and a card letting you know he understands how unwell you are would have been more appropriate from the boss! Some people! Grrrrr xxx
Hi Shalf,
I don’t know of any carers services at all. Are these accessed via hospital? My emotions are all over the place.. frustration, pain and guilt for not being able to do what I usually do for everyone. My boss is an absolute arse too. He is the least compassionate human being I’ve ever met! Thanks for taking the time to reply to me. Sarah xx
Sounds awful, I think that we are all surrounded by people at work who either don't understand or don't care, have you given your boss and or HR a copy of the NRAS employers guide to RA ? That might be of help, that's of course if they bother to read it. I have told both of my bosses and the HR chap and given them a copy of the publication, none of who bother to ask me how I am. My immediate boss has health issues - mainly self inflicted, too much booze, not bothering to eat properly (mainly pasties), along with a gambling habit, his boss, my dept. director, asks all the time how he is, but never how I am ...................I feel your pain..............too many arses in the world............
I would ignore the laptop or drop it from a great height - if you are off sick, you are sick and they shouldn't put that added pressure on you, as it only compounds the stress and pain !
As for your mum ............mines the same complaining about her OA, I do tell her its not the same, but she doesn't listen.................eye roll ! If everyone could just experience RA for one day that would change so much ...............
I hope you told the nurse where she could stick that hot water bottle 
I do hope you start to feel better soon x
You could do with talking this through with someone who understands - what about contacting the NRAS helpline? It sounds as if you feel totally overloaded and that can't help you with coping with your treatment (or work!!!). Pain in your shoulders and neck may be added to by stress - I know that happens to me, so look too at what you can do in that direction.
Feel free to have a good moan on here where everyone does understand how awful you feel.
Hi,
Thanks for understanding.. I am under a lot of stress particularly at work and I am the main earner and pay the mortgage and bills. My eldest is at uni so trying to help him and also my other boys are 12 and 8. Sometimes I think when I get a huge flare it’s my bodies way of saying now you’ve got no choice but to stop. I’ve never contacted the helpline.. I might have a look. Thank you xxx Sarah
Do contact the helpline Sarah...I'm sure they will be able to at least give you some tel numbers to access some practical help, until this rotten period has passed.
I'm afraid I can't comment on your infusion .....but if you do go to have it tomorrow .......really emphasise to the person giving it how bad you felt after the last one & get assurance that it's not usual with your particular infusion.
Your Mum is probably really scared seeing you in such pain, so maybe if you just say Mum, can you get the children's tea, or put the WM on.....that will take the pressure off you doing it, & hopefully with doing something practical....she will hold off being so critical.......think how you'd feel if it was one of your boys...you'd be worried sick, & that is probably why she said such a hurtful thing.
Do hope all goes well tomorrow& that the infusion kicks in & helps.
Thanks AC.. you have given me a different perspective regarding my mom.. although she is a little cold at times she is great practically and done housework and ironing and picked boys up from school. The nurses on the day unit are brilliant (Shame they don’t work on helpline) so I’ll see what they say tomorrow. Thank you for your support. xx
Been there bought T-shirt as they say.
My friends all try to understand because I live alone, & think it must be awful, but the way I feel is I can just please myself when going through a bad patch, without the stress of trying to make other people feel better.
I'm sure your nurses at the day unit will get you sorted out, even if only with better pain control until the infusions kick in.
Look forward, this time next week, it has just got to be better than today.
Good Luck tomorrow!
Thank you ♥️
Dear sjhewitt42
I really feel for you. I have been there. I remember being in a state of panic. Problem is you are the family lynch pin and all hell has broke loose. I remember the pressure feeling terrible for being so ill worrying everyone unable to do anything. Unfortunately/fortunately your Mum perhaps has never had this kind of pain and therefore just doesn’t understand. Your work will simply have to come at the bottom of the pack for now. Sorry I don’t know if I am helping much. Try and just get some help with basics. You will get the opportunity to discuss how the infusion has made you feel tomorrow so make sure your voice is heard by the rheumatology team as this is very very important and a priority.
For me it did get better. I got help with domestics and got lifts for my boys to school. It was a terrible period but it did pass. One thing for sure it will make you a very strong person. My boys learnt that life isn’t always good and they had to do lots of chores and be more self sufficient, in the long run this was good. If you have a good colleague do tell them exactly how it is.
Crazy as it seems try and slow down don’t think about all the impacts at once. Good to use this site to know you are not alone.
Thinking of you
Thank you so much for your reply it’s nice to know that people understand. I can usually ‘manage’ my pain and swelling but now and again it’s out of control. The boys are good but my husband gets frustrated and is not too helpful at times as he tends to bury his head. Other times he’s ok. I know the period will pass but when you’re in the middle of it, there’s no let up. Sarah xx
Hi, sorry to hear about the awful struggle you are enduring right now.
It seems you are in the USA? NRAS is a UK site so our experiences may well differ to yours on healthcare provision.
But all of us struggle too much most of the time just to survive never mind work too.
I hope you find relief soon.
Hi no I’m in the midlands in UK. I do think that the level is totally different across the country. Thank you for your kind words xx
I’m sorry you’re having such a tough time right now. I would rethink the infusion as well.
Hang in. It’s bound to get better. ❤️
Thank you so much xx
When i first had a rituximab infusion i felt like i had a bad flu , i also had gastritis, this lasted for over a week then had second infusion which wasn’t just as bad . I now get a slow rate infusion which has been fine — I know its a different drug but maybe similar side effects?
About the cabin fever , I understand how you feel, I slipped a disc at Christmas and i was in awful pain , could barely walk, it was July before i had improved. I had to content myself as I could do nothing about it , i was miserable and frustrated at times but i read and watched box sets , ate too much chocolate. I knew in my heart I could go down a dark path , it was hard but my husband is great and keep me going . It is very hard , especially when you have kids to get out to school and sort out , mine are in their twenties. I am sending you lots of positive thoughts and gentle hugs , this site is so good at providing support and advice, i hope you start to feel better soon and the infusions works . Best wishes xxx
Thank you for replying to me, it is very much appreciated. I am going to see what the nurses say tomorrow. They are far better than my consultant or any of the new nurses (trust has merged with another and continuity of care is terrible)
I have nearly watched every episode of Peaky Blinders so am looking for another box set as I can’t bear daytime tv and snap with chocolate - I am def comfort eating abs getting fatter!
Thanks again. Sarah xx
Your boss has broken several equality act and employment laws there... do you belong to a union or can you get CAB advice on that one? Please make a note of date, time and what was actually said when the laptop was delivered.
I won’t comment on Mum cos they do funny thinks at times of pressure particularly when they don’t think they can help... keep her inside for the practical support and access others for the emotional support is my advice on that one!
All the best
Ali
Thanks Ali. I don’t belong to a union but I have kept the texts saying he was dropping my lap top off at home. Unfortunately with this disease you can look ok when you are in absolute agony as we all know. He has subsequently emailed me a few times pressuring me to go back by inviting me to meetings and saying when you’re back on Monday etc etc.. problem is the company I work for is a plc but not ethical at all and are quite underhand in some HR matters. I’m trying to set up on my own (I’m an accountant) at least then if I’m feeling rough I’m not dragging myself out the house to please others.
Thanks for your support, it is very much appreciated xx Sarah
Don’t attend any meeting without a 3rd person of you choice present and they can make notes. It would be best to join a union ASAP as they will provide the 3rd person. Print and keep the emails they are legal documents - hey at the end of the day all this will inform your own practice whenever you’re up and running but until then cover your self re this employer’s attitude.
All the best
Ali
Thank you. I will definitely take your advice on board. xx
Sorry you are having such a tough time. On the Mum front, I think Mums come under tremendous stick because we so want them to understand and accept us, whatever. Sometimes they just can't. My Mum was great practically and couldn't wait to help in time of crisis, but she was no good on feelings. She wouldn't actually say 'pull yourself together', but i would know she needed me to, for her sake. She showed her love by 'doing' and got business like when emotions were involved. Your Nurses sound great and this forum is fantastic for understanding, day and night. Hope things improve very soon.
Thanks Norisa. Yes my mom and I are very different in that respect. I don’t know where I would have been in the last few weeks if it hadn’t been for the support and empathy here. It’s such a blessing. Thank you for taking the time to reply. xx Sarah
What a terrible night ! Terrible 2 weeks actually. Support or a kind word from a fellow sufferer would would be lovely. 🌸
Sick of being sick
Ticilizumab Infusions
