[Beanbag]

Hi,

I am a married mother of 2 girls and was diagnosed earlier this year with mixed connective tissue disease and SLE, after many years of feeling unwell. Last month I had my first acute flare requiring hospital admission and am currently signed off work due to inability to walk properly, joint discomfort and extreme fatique.

I would be interested to hear how other people cope with coming to terms with this condition as all I have to go by is leaflets. I am usually a very stubborn, independant lady who is used to pushing herself to achieve her goals in life an get things done. I find it very hard to ask for help as have always done things on my own with minimal of help - which my husband finds frustrating as he watches me struggle to complete tasks!!!

 

[Katharine]

Hello and welcome!

You sound like you're describing me!!! the being stubborn and not asking for help bit.

I have slowly learnt to adapt. I post quite a bit here and even recently realised how overwhelming and helpful other people's support can be when you really need it.

This is a very special place, simply because everyone understands. Truly understands.

Hope to hear more from you soon,
Katharine

 

[sadieone]

Hi Beanbag,

I'm sorry to hear you have been diagnosed with this awful disease.

MCTD is basically the same as lupus but we suffer with other issues that over lap. For instance i have IBS(irritable bowel syndrome) GERD(
Sjogren(chronic, dry eyes, mouth and nose), Raynauds(fingers turn blue or white at the presents of cold), COPD(chronic obstructive Pulmonary Disease)and more.

No one is saying you are going to get any of these on top of your joint pain and fatigue. I'm just sharing what I go through and it is not as bad as it sounds. To look at me you would not know i was sick at all. I just have to say thank God for the people who made all the drugs i take to keep me functional.

I was in denial for a year thinking i could make things better if i pretended I wasn't sick.. Push through the pain and things will get better. That just made me sicker. Pushing yourself makes everyone sicker with this disease.
To cope is to take it one day at a time,,, rest when you need too,,, mean time find out as much information you can about your disease. The internet is and excellent source of information about this and many other diseases. Share all our information with you family,, especially spouse.

Knowledge is power.

We have a great support group here, as i have been here for 2 yrs now,, ever since i was diagnosed. The people in this website are my extended family.

I've learned my limitations and have designed a way to stay active and productive within my own home since i can not work.

We have a chat room were we can share our aches and pain and just have fun friendly chats

[SIZE=+3]The Serenity Prayer[/SIZE]​

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference. Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

[SIZE=-1]--Reinhold Niebuhr[/SIZE]


















​

Listen to your body and adhere.

Take Care
Good Luck

 

[Beanbag]

Thank you Katharine and Sadieone fr your kind words of welcome.
I can relate to some of the complaints you have Sadieone. I also have Raynauds, and have wheat, gluten and dairy food intolerances, GORD (gastric oesophageal reflux disease), respiratory problems and suffered a PE (pulmonary embolism) post hysterectomy '03. I also thank the use of different medications but would like to come off the steroids as they have caused weight gain, bruising and thinning of the skin.

I am still employed (although off sick at present) and work in a busy emergency department. I have also just passed my BSc (hons) in Professional Clinical Practice - 1st class. I have had to reduce my hours though but am thankful I still have a job.

I am trying to follow advice given by the ME Pacing booklet - which was emailed to me by a colleague and had a lot of info that 'hit home'!!
I look forward to meeting new people who understand what I am going through. My family are very supportive but don't really understand how I feel and it gets frustrating for us all when they look at me and say - you're looking well today. It's amazing what make-up can do!!

I had my first physio assessment today and have been given a stick to use so I can walk out of the home - although this is making me feel self concious as people stare. However, it is making the joint pain easier so I will have to swallow my pride and stick two fingers up to people who stare!!!!

 

[elisabethm]

Hi beanbag you will find a lot of support on this site as we all have i think we all push our selfs to do things on our own.My hubby is my carer and he goes mad at me when i try to do things that i am not able to do but as you said it is easier said than done hope you keep posting as this is like haveing an extra family as we all know what each of us is going through BEST WISHES Elisabeth

 

[Joandublin]

Hi Beanbag

Welcome to the site Im sorry of course about what brings you here but I know that you will find much support and good advice and information from all of the other members here.

I can empathise with feeling self conscious about using a cane. I use one very occasionally but I do my best to do without because I feel self conscious. Stupid...I know. I wouldnt bat an eyelid at someone else with a cane so whats that about?

However, it is making the joint pain easier so I will have to swallow my pride and stick two fingers up to people who stare!!!!

:lol: I might just borrow your philosophy! However a word of warning - be careful when sticking those fingers up that they are not the ones holding the cane! :lol:

Take good care and hope to hear from you soon
Luv n stuff
Joan:rose: