lots of medications and blood tests

[ijeasike]

I have just been diagnoised with lupus nephritis. it has been a roller coaster ride (loads of medication) i just started my first dose of cyclophosphomide and i have a six months old baby. Pls can anybody tell me how they coped with their illness.

[Hidden]

Coping with chronic disease disorder is a very individual matter. Some cope better than others. If you Google 'Coping Techniques' there are many websites with loads of options and theories.

For you as an individual with a 6 month old baby ... you have an excellent reason to develop coping skills ... your baby needs you.

Take joy in the little things. Your baby's giggle for example.

Be present for yourself for your baby for all of your loved ones. Live in the moment. Just be.

Positive thought : I am. I can. I will.

Do what you can when you can.

Rest when you need to. Relax. Breathe.

Visualize all the good things in your life. Push the bad aside (but do not deny the bad exists - that's a tricky bit).

Come to LupusUK share and care with members here. A shared burden is halved. Support is always here when and or if you are in need.

I hope this was of some help to you.

May you be well. For you. For your baby. For your family. Carry on strong. Survive and thrive. You can do it.

[ijeasike in reply to Hidden]

thank u . it just abit overwhelming and the emotional stress too. I am thinking of going back to work but my doctor suggest that i delay resumption and probably start with part-time. I dnt want to be a burden on my family. Some days am very strong while some day am so poorly but i know thing will be get better.

[mstr]

Hi there, it certainly sounds as though you have indeed been on a difficulty journey. Have you thought of getting some support via your health visitor. They will know about any practical support that you can ascertain in your local area. This may be things such as family support help if you need it with certain tasks due to your illness. A health visitor will also be able to put you in touch with other mums in your area and you can form a support network. This is because as well as having a baby you are also juggling your own needs/fatigue/pain etc. Don't worry about asking if there is any extra support out there as we all need it at different times in our lives. Practical support can be someone to help with the shopping/baby/working alongside you etc. Health visitors will also be able to sign post you to any volunteer groups in your local area that may be able to provide support to you. Best wishes to you.

[ijeasike in reply to mstr]

i will check on the health visitors, thats a good suggestion. bcos i do need it

[poodlegal]

hello,know what you are going through,i found last year stage 4 nephritis,know what you mean about meds,i rattle!!! i really didnt come to terms with it for a long time but how did i cope? you just do,what else can you do,some days are awful,others are good so enjoy your good days,put up with the bad days and remember you are not alone,you should be getting lots of support from the doctors at the hospital and if not ask for some,really feel for you and on a positive side at least you are getting the correct treatment to help your kidneys,keep smiling,lots of love x

[ijeasike in reply to poodlegal]

thank u .lol x

[sollyn]

I was ill from the minute I got pregnant with my daughter. We are now 12 years down the road and a lot of challenges behind us.

I would like to say that this will not stop you from being a fabulous mother nor will your baby know any difference and will adore you regardless. I tried to not burden anyone else with my illness, but things only got easier when I did start to ask for help.

Asking for help also gives the people around you a way of feeling useful and helpful with regards to you feeling ill. It is easy to become so focused on being perfect that the people who love you end up feeling locked out.

I really hope that you start to feel better, in the meantime, take lots of photos and make lots of notes to remind you later what your baby was like. I have photo's of my daughter that I don't remember the outfit, or the venue etc. So I am glad that the family took it upon themselves to document every milestone etc.

I have a fabulous relationship with my daughter, she knows how to do stuff for me and also carries the bags, helps unload the car and all sorts of stuff that enables me in turn to go girly shopping and swimming.

I really hope you feel better and take time to really enjoy the baby, but don't be afraid or feel guilty that some times you need a bit of help.

x be well.