Constant Illness - It's getting too much!
Hi there - I was diagnosed with RA one year after my daughter was born, aged 33, after a year of doctors telling me I was just tired and sore because I was a new Mum. That was two and a half years ago. I am taking Sulphasalazine, which has been good for controlling my symptoms etc.
I have managed quite well since my diagnosis and although I have experienced some horrible infections (hand, foot and mouth being the worse by far!) it's all be very manageable and I have kept my spirits high.
My daughter is now three and a half and I have been blessed that she did not have to go to daycare before now, but in preparation for school, which she starts next year, she has commenced pre-kindy three days per week. As a result, I have been continuously sick with one infection after another (gastro, sinus, throat etc) for four months with only a couple of days break here and there between each infection.
I am at breaking point and feel very low and tearful most of the time, as I just can't seem to get well. It appears I have swapped one condition (RA) for another and I don't know which is worse!! My husband is a FIFO worker, so I am a single parent for half the year and when he's home I am tired of being sick each and every time.
I discussed it with my GP and told him of the measures I take to try and stay healthy (vitamins, healthy eating etc) and he told me to save my money and this is my foreseeable future until my daughter leaves school. This advice has just put me in a hole of distress which I can't seem to climb out of. I can't keep living like this.
I would appreciate any advice or assistance to get through this difficult time in my journey. Many thanks
Hi Amber~
I am so sorry to hear about your recent struggles with infections. I have a two year old myself and I know what little germ balls toddlers can be! Especially when they are all exposed to each other like they are in school!
Unfortunately, treating an autoimmune disease like RA often requires medication that essentially dampens your immune system farther - which can make us more susceptible to infections - so I certainly understand your frustration in feeling like you traded one illness for another. However, it is also very important to make sure your RA is properly treated so that you will be able to function to take care of your little one and also prevent long term joint and organ damage. So continuing to treat your RA is important. What you need to do is work with your doctor to minimize the negative side effects of your necessary treatment.
A couple of thoughts/ideas for you:
You said you have discussed the issue with your GP - by which I assume you mean general practitioner? Are you also seeing a rheumatololgist, or specially trained arthritis doctor? Because if not you really should be. Rheumatologists are specially trained to treat RA and have more knowledge about the balancing act that is treating autoimmune conditions than an ordinary general doctor. A rheumatologist may be able to give you some better suggestions or treatment options that would help you treat your RA while minimizing the infection you are experiencing.
Also (and this is my personal opinion here) your doctor really should not write off your concerns the way he did. It is your doctor's job to help you feel better. If you bring up a legitimate concern with your doctor - like your susceptibility to infections - a good doctor should work with you to attempt to address these concerns, not make comments that make you feel worse/depressed. So it may be worth getting a second opinion from another doctor - and I would highly recommend seeing a rheumatologist/specialist for this purpose as opposed to a GP.
Lastly, as a mother myself, I know that it can be very hard to avoid getting sick when kids carry all the germs home with them. I do think that there is an adjustment period for the family as a whole when your child first starts school - especially if that happens over the winter - so perhaps things will improve as we move into summer time and fewer children are sick at school? You could also put some "germ warfare" tactics into place - like being sure to wash your child's hands or using antibacterial gel as soon as you pick them up, to attempt to avoid bringing germs home. It may also be worthwhile to review your child's school's illness and cleanliness policies - are they allowing children who are ill to be at school when they shouldn't? What symptoms cause them to send students home? How do they deal with dirty toys? How often are classrooms cleaned/sanitized? It may be worth choosing a school that has a strict "stay home" illness policy for your child, considering your personal health situation.
Being a mama with RA is hard work. I understand what you are going through and I know that it is not easy! Hang in there, Amber, and remember that we are here to support you!
~Mariah~
You may also be interested in this recent post from one of our bloggers - experiencing similar issues!
Hi Mariah
Thank you so much for your reply, I really appreciate it.
I confirm that I am under the care of a Rheumatologist and have been since I was diagnosed. I emailed him also yesterday actually and he is bringing my review forward so we can discuss alternative treatment options to try and help me out of this hole!!
The GP in question is not my usual GP and certainly won't be into the future! It's funny, I read the blog you recommended and she stated that taking Vitamin C etc improved her situation. This is what I had started to do, Vitamin C, Zinc, Fish Oils etc and that's when the GP told me to save my money because it was a pointless attempt to boost my immune system given the medication I am on. After reading the blog, I have started wasting my money again this morning! 😀
Being in Australia, we have just turned into winter, so it's a long few months ahead it seems, but I understand what you were saying. And trust me, my household is all about germ warfare!! We shower Ella as soon as she's home from school and put antibacterial gel on her hands as soon as we pick her up. I'm very proactive about washing hands etc. I also had a lengthy interview with the school before enrolling Ella, for the very reasons you have suggested. The owner actually has an auto immune condition herself, so is very pro active on trying to keep things cleaned. It will never be to the standard I would prefer, but of all the places I went to, it was by far the best. They don't stop all children with runny noses coming to school, but they do send children home if they are showing signs of being unwell and then notify all other parents.
One thing that stuck out to me from the blog, was the benefits of getting enough rest and this may be one of the contributing factors for me. My husband works away for three weeks at a time, so I am a single parent during that period and have the responsibility of looking after Ella, the house, the garden, the cats and working part time. By the time he comes home I'm spent! Plus, as Ella turns four this year, she has outgrown her afternoon naps, which she was having up until Feb/Mar and I used to take advantage of that time to have a sit down, which I don't get anymore.
I think this may be an area I will need to review, in order to help myself turn the corner. I'm a bit of a clean freak by nature and possibly just need to let some things go for the sake of my health and my family.
Well, thank you for letting me vent, you have made me feel better and I thank you for your support.
Amber 😀
Hi Amber~
I'm so glad you got in contact with your rheumatologist! Hopefully he will be able to help you balance all the issues you are experiencing! Being a mama with RA is difficult enough and I can't imagine doing it without the help of my partner, so I am very inspired by your ability to keep moving forward as a part time single mama. ~;o)
Hang in there and please remember that I am here to talk if you want to vent or chat or cry. ~;o)
~Mariah~
