Learning limits
hi all im Sam and im 27. I was diagnosed with RA 6 years ago after 15 months of them trying to work out what it was and then fibro around 2 years ago and last month I was diagnosed with a Transitional spine. At the time I was diagnosed with RA i had 3 kids, I now have 5 who are 9, 8, 7, 3 and 3 months. From the start with the diagnosis I was never given much support, mainly just meds that haven't really worked. During my 4th preg my arthritis advanced a lot and its not been under control since then, my last preg was a big surprise. The only thing I keep being told is I need to learn my limits and try to take it easy.
Does anyone else struggle with doing that? I feel that I cant talk to the nurses I see fortnightly. I go in and have my blood taken but haven't built up a relationship with them and my consultant has told me numerous times that its all just guess work really. I have a few friends with RA who are sympathetic but those that don't know seem to think that I shud just sit and rest and its that easy when anyone with these conditions knows that its not that simple.
People who don't know seem to think im superwoman with 5 kids and are surprised when they hear iv got these conditions as the general consensus seems to be that when u have them ur either ready for ur pension or crippled. I have my good days and my bad days but some days I just feel completely alone with this, my natural instinct is to push my limits to their extremes but now im being told iv got to learn where my limits are, I wish it was as easy as its made out to be . . .
Hi Sam ~
As a mama with RA myself (my kiddos are 2.5 years and 6 months) I understand the additional struggles that motherhood places on having a chronic illness. I'm so sorry to hear that you haven't had much support. I'm really glad that you have found our community because we understand what you are going through and we are here to support you!! It's natural to want to push your limits - especially with so many little ones depending on you! There's so many things I probably wouldn't be able to do just for myself, but when it comes to my kids I often push a lot farther through the pain than I ever thought possible!
As far as your medical team, the important thing to remember is that they work for you! It is their job to help you find a treatment plan that you are happy and comfortable with - and if they aren't doing their job then it may be time to choose a new doctor! You mention that you haven't had much luck finding meds that work - are you being treated by a rheumatologist? A rheumatologist is an arthritis specialist and the best person to help you get your RA under control, though sometimes it can take a lot of time and trial and error to find a treatment that works.
Best of luck to you and please remember that we are here if you need someone to talk to who understands!
~Mariah~
hey hun thanx so much for your reply.
The consultant I see is the rheumatologist, im told hes quite good in his field. As far as understanding about me having a lot of pressures with the kids etc hes brilliant but he was the one who told me its all guess work. Atm im being tested for biologics but the downside to this is that one of the tests they need to do involves me being on a med we know doesn't work for me. When we found out i had a transitional spine my gp put me on nerve controllers but theyv never made an awful lot of difference either. Everything theyv tried so far seems to just prove that its severe but im finding it really frustrating that we are now goin over old ground proving what doesn't work so we can get access to something new
Good I am glad you are seeing a rheumatologist! Unfortunately there is a lot of trial and error involved in finding the right medications. I am in the process of switching biologics right now so I am in the same boat! The hoops they make us jump through can be difficult and frustrating - I always just try to remember that it will be worth it in the end if I am able to find a medication that will let me feel good enough to roll around on the floor with my kids! ~😮)
Hang in there, mama!
~Mariah~ (Site Moderator)
Medicine is guess work. A diagnosis is an educated guess. Based on the level of medical education the Dr has. Drs go with what the highest percentage that works for most patients. But the catch is, we are individuals as humans. So what works for one may not work for another. A good Dr will keep trying to find what treatment, med that will work for that patient. It's hard but hang in there. Let your Dr try to find what works for you. People tend to think there is a miracle cure for everything. There is not. Good luck to you. My Dr is also trying to find what will work for me as well. So I am in the same boat. 😀
