Am I alone?

Currently I feel as if I am going slightly crazy. 3 years ago I was diagnosed with SLE with renal involvement, APS, Raynauds, Fibromyalgia and multiple pulmonary embolisms. I am also photosensitive and have difficulty both in the sun and under fluorescent lights.

However I now find I am doubting both myself and all the professionals that I even have all this. Yes I'm tired, depressed (very), have pains in my joints, pins and needles in my feet and hands, cracking headaches and can't walk far anymore. So why am I doubting that I'm I'll? I keep getting told how well I look and get questioned as to how I'll I really am. Some days I just don't see the point in being here any more and even get disappointed when I wake in the morning. I know that sounds terrible as I have so much to live for but just cant help feeling this way. I actually want to be as I'll as I was when I was diagnosed - there were those who didn't think I'd pull through and I had to let the doctors make all the decisions for me. but why do I want to be like this when deep down I really don't want to be like the again?

Does anyone else ever feel like this? Please let me know if anyone understands? Thank you.

9 Replies

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  • I have just read your blog and it saddens me very much to hear you, or anyone else, feel so low!!!!!

    I have felt the same desperation in regards to how it feels when people tell you how great you look, when underneath you feel like a piece of you is dying every day, but sometimes ....if you hear it often enough, you can begin to believe that you look good and it is always a little uplifting..... for me, anyway.

    I would love to hear that you have sought a doctors advice as you are quite obviously depressed and in need of anti depressants. I have been on CITALAPRAM for about 3 years now and they have helped me immensely. Once your mood has lifted a little then you will begin to see life differently.

    God Bless and please start to smile again xxxxx

  • P.S. Dont ever feel as if you are alone in this .....there is always someone on here to uplift and encourage you xx

  • Hi so sorry to hear that you feel so low and I think Mandie's advice is 'spot on' regarding anti depressants. To also answer your question I think you may also doubt you are ill because of other people's perception of you. I think it is good to remember that these are people who don't know you and how ill you are. You also probably have your condition managed by meds now so you therefore doubt that you are/were ill. It seems to be that you have been very ill and are still learning (like we all are) to manage this illness. Please do not doubt yourself. I do understand what you mean as I sometimes think this is all in my mind. Luckily I have a GP who quickly puts my mind a ease in this respect. Please trust your own instincts. You may want to look ill so other's can see how bad you are but be strong and try not to look for other people's affirmations that you are ill. You certainly ARE ill. I look at this from the perspective that there are others out there who look at me and will think I am well. There are also those that know me who know I am not right, either emotionally or physically. This is an invisible illness I find that can 'rob' people of their own identity and cause them to question themselves so much. You seem to have managed to overcome so much so I wish you all the strength in the world so that you can ignore the people who are ignorant of this illness and embrace/appreciate those people that do understand you. Kind regards.

  • Thank you both for your kind words. It took me days to pluck up the courage to ask this question and your answers have made me so glad that i did. I am currently on anti-depressants but feel I should get the dose increased as I know my depression is getting worse. I'm afraid that if I fall apart I won't get myself together again.

  • Hi, so glad our comments helped a little. Good idea to speak to GP about dosage. Also you are strong so with perseverance you can overcome obstacles again. I find some of the lines from the poem Invictus has a good message:

    It matters not how strait the gate,

    How charged with punishments the scroll,

    I am the master of my fate:

    I am the captain of my soul.

  • Every day, regardless of how I feel, I get up and put my makeup on! If I ever catch myself in the mirror it makes me feel better about myself. I also have some gorgeous heels that I wear just to make me smile! I know it sounds silly, but it is just a small way to keep up my spirits.

    You are definitely not alone in your feelings of feeling like you dreamt it all! See it as a step forward.

    I definitely agree with the antidepressants. I have also been on citalopram for a number of years.

    If you think about it, we would be pretty amazing if we could take all our meds and put up with all the pain and frustration day in and day out with out a few unbalanced brain chemicals whizzing about.

    The hardest thing about it is never feeling on top form. Always having to pretend that you are fine. Not to mention the mammoth effort that goes into just doing normal every day stuff.

    So please take heart that you are not alone, neither are you crazy. But please go to the doctor and tell them how you are feeling. If you can't face the phone call, please get someone to make the call for you.

    I really hope you start to feel a bit better soon. Take care.

    x

  • Hi x I agree with all the other comments made here. Feeling always in pain and unable to relax in any normally relaxing situation due to sunshine/florescent lights and not being able to walk far is a very stressful daily grind. Depression is a natural response to this. I agree that you need to tell your GP how you are feeling or get help in communicating this. You ARE ill and you need support.

    I also admit that things were easier last year when I was on crutches because people could SEE that there was something wrong and I was struggling. This year it's more in my arms and it's invisible to people and I find this frustrating! I found it easier to cope with a more acute flare, than I do now with a less visible prolonged ongoing flare. So you are not alone. Take care. xxx

  • I just want to reassure. You, along with everyone else, you are not alone! Last june I had what can only be described as a stroke, and spent 3 months in hospital. However drs didn't agree and said it was all in my head and referred me to psychiatry unit. 12 months on I still can't walk unaided, along with many many other lupus symptoms. It was only when I paid to go to see a private rheumatologist who took one look at my symptoms, family history and blood results and immediately diagnosed SLE! The only downfall now is that I can't start treatment because my liver has been severely damaged because it wasn't diagnosed sooner.

    It just goes to show that the many drs haven't got the training experience or capacity to recognised this horribly dibilitating illness, the only person you can truly believe in is yourself!

  • Thank you to everyone for your comments - it really helps to know that others know what I'm going through. Anyway I saw my doctor today and she has increased my anti depressants. She was really lovely and said she's surprised I cope as well as I do, which made me feel as if I wasn't making a mountain out of a mole hill.

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