Hate my body

[Tulipano]

Since being ill I put on so much weight I don't even know how. I Am not even on steroids yet i am scared how big will i get once i am going to use the steroids? . People keep telling me to exercise and they just don't realise how difficult is for me just to walk the dog and clean my house. I am in constant pain and feeling exhausted. When I say that I hardly eat they don't believe me. I know I am overweight I wish I could lose weight but I don't know how. Every time I try to lose weight it takes ages to come off. I just hate myself 😭

[nigelsmum]

I know how you feel. I have never had a problem with my weight but for some strange reason have put on 2 1/2 stone in less than six months. I don't take steroids either. I did read somewhere that the average weight gain with fibro is 32 lbs - presume due to the problems exercising. I have had my thyroid tested ( as could be yet another auto immune problem ) & this came back normal. I have joined a gp referral hydro class at my local pool. I didn't have to go through the gp just spoke to instructor at the pool. Its a class for people with medical problems to do exercises supported in water & have a really good laugh. I also have arranged for someone to take me & pick me up & I do little else on that day. Perhaps there is something similar near you ?

[Wendy39]

Hello.

I know exactly how you feel! Even worse is that they say losing weight without explanation is indicative of lupus disease activity. Well I don't ever seem to lose weight. Trust me not to get that symptom!!! I have had periods when I have felt dizzy and nauseous and gone off my food, but only ever briefly. Overall I am gaining weight. I am creeping up now from a 14 to a 16. I do love food though and have little will power. I am trying to stick to eating at meal times and no snacking, that seems to work OK. I don't drink any more, as on Mepacrine and you aren't allowed alcohol with that. So that is less calories too.

I used to run, 2 or 3 times a week and do 10k races and I've done 3 half marathons. So even after having 3 children close together, I was able to lose my baby weight and get myself back in shape. I felt good. Then the lupus and the osteoarthritis came along. I have been told I cannot run for the sake of my hips and to be honest, with the lupus it would totally wipe me out. I still miss the running, as I could eat virtually whatever I wanted and still keep my weight stable.

So now with lupus and the fatigue and osteoarthritis in my hips, knees, back etc I am limited with what exercise I can do. I was told in April to walk 10-20 minutes every morning and that this would improve my energy levels and help fight fatigue later in the day. But I am not convinced it helped. After 2-3 weeks my hips were unbelievably painful! At the end of the day, when I feel good I am an active mum and we do walk at the weekends etc when we can. I iron and cook and do the washing etc. I go to a Pilates class once a week. But when I am in a flare, I do the school run and go back to bed. I do have a nap most days to help pace myself with all the after school clubs etc.

I am not happy with how I look. But then I'm 43 now and middle age is a difficult one. Some of my friends have weight battles and they don't have lupus or the arthritis. I am lucky though that my husband doesn't seem to notice and loves me the way I am. it's just me being super hard on myself.

Are you able to exercise or take a walk? Have you ever been referred for physio to help you know what exercise you can do and what would help you? Swimming is often recommended along with walking.

Please don't feel so bad about yourself. Us woman give ourselves such a hard time.

Wendy

[SjogiBear]

I am fed up with being overweight too but have to admit to having very little willpower. Sometimes I can walk well and at other times it's difficult and then it's tempting to just sit in a chair and eat. I eat healthily but probably just eat far too much. Anyway, I do know that I must do something NOW as having reached the age of 51 I am fully aware that it's doing myself no favours and is not going to get any easier to lose as I get older.

I joined Slimming World for the first time on Monday evening this week and I've been reading all their material and their website. I find the over-reliance on artificial sweetener rather frustrating as I will not touch that stuff with a barge pole (just read up about the links between aspartame and lupus for example) and like all these dieting businesses they do want to sell you their own products (a. too expensive and b. don't eat gluten so most of them are no good anyway!). Do I have a bad attitude before I even start properly?

Anyway Tulipano it sounds as though there might be more going on than just an issue with weight? It sounds from your recent posts that you are very down at the moment and this may be affecting your self-esteem and how you view yourself. Have you had a chat with your GP about how you are feeling as this might be worth doing?

[Wendy39 in reply to SjogiBear]

Good point SjogiBear. A chat with your GP seems to be in order. x

Also, my mum did Slimming World and lost weight, but I didn't agree with all the principles - they sell ready meals - I never eat them - sweeteners - are a no no for me and all fats are bad - which I tend to disagree and I use a variety - olive oil, coconut oil etc.

I just cook from scratch. Fresh veg etc. Make my own sauces. Use wholewheat or 50:50 pasta etc.

But I couldn't do it cooking for a family of 5. The boys are growing fast and love their carbs!

I hope you find aspects that work for you. It is very hard.

Wendy x

[SjogiBear in reply to Wendy39]

I've tried to just eat healthily and lose weight myself at home and I just fail Wendy - I'm also catering for a family which doesn't make it easy, especially when we're always so tired My daughter (aged 11) has always had problems with her weight since she was small too - she is coeliac but doesn't present as a typical coeliac child - so we are going to have a go together. However, as you say as well, I don't really agree with a lot of their theory . . . apparently you can eat potato and rice freely (!!!) - well I thought that would result in taking in far too many carbs. Like you, I also like to use olive oil and coconut oil and even butter - I refuse to use manufactured 'spreads'. I never buy ready meals apart from the occasional gluten free pizza either - I like to know exactly what goes into my food. I try to buy organic if I can as well.

I have a feeling that SW and myself are not a very good match! I may end up doing it my own way for a bit and see how it goes - at some point forking out £4.95 every week is going to start to rankle too

[Wendy39 in reply to SjogiBear]

I guess you won't know until you try and it's worth a go. My daughter aged 9 is over weight. 😢😢 She's had bullying issues st school too. So hard. I blame myself. She wasn't big until I got ill with lupus, diagnosed 2013. She was just normal until then. But I have struggled to get in top of my lupus, until now, which has meant she hasn't been as active as she should have been. When I worked and she was 5/6/7/8 years old, I would finish work and collect them from school and go to bed for 2 hours to get enough energy to cook an evening meal. She was small and I worried about what she would do whilst I was sleeping so used to say sit on the sofa and watch TV, stay there so I know you are safe. Goodness knows what she was eating when I wasn't around. Now trying to make her aware of food and portion control etc. Hoping some if it is "puppy fat" and she'll shoot up and slim down before she goes to comp. but the guilt is horrific! Anyway, good luck. Let me know how you get on. X

[SjogiBear in reply to Wendy39]

Mother's guilt is yet another way we can beat ourselves up isn't it. We had a letter home from school when dd was in Reception to say that she was 'obese' (she looked like a normal child!) - we have done two council-funded weightloss programmes which made no difference, she doesn't snack between meals and never has done - she cries because she has a healthy lunchbox whereas the other children have crisps and chocolate and yet she is the one who is 'fat'. My heart just goes out to her - it's so sad. The dietician has said that it is probably linked to her coeliac disease.

Thanks for the good wishes - Lara sat in the car and cried after our first session on Monday. She couldn't voice exactly what it was that had upset her but we did joke that it did seem like going along to 'Fat Fighters' on Little Britain if you ever watched that!

You mustn't blame yourself over the bullying - it's the bullies who are to blame. Children can be so vile to each other - my dd has had this at school as well because of her weight. She has just started at her secondary comp so we are treading very carefully at the moment.

Take care Tx

[Wendy39 in reply to SjogiBear]

I know. It's difficult to know how to deal with it and what to say. Especially as I have a son who is a worrier and anxious and has verged on anorexic at times, worrying he is over weight and not fit - when he is a perfect size and the fittest of us all. 😬😬😬 Parenting is so tough with weight issues these days. Best wishes. X

[DaddyzGrl in reply to SjogiBear]

I am just pointing something out. Please don't get offended by this. But young girls, as I am well aware of, now almost 47, we internalize the discomfort of others as our own. Especially, our parents. More specifically, our mother. Also, it could be changes that are going to happen because of the pending menstrual process. Just be yourself and keep it real, within your level of comfort and her level of understanding and need to know. This will pass if you are lovingly attentive and not self esteem bruising. Trust I have lived with this to this very day, and it hurts. You can do it. If all else fails, be vulnerable and cry, we as Mothers are stronger even at our weakest. Let her see you from both sides. You will make a wonderful young woman. I have sons and I follow the same concepts, just with more smelly socks, and wrestling on my furniture. ☺

[Wendy39 in reply to SjogiBear]

By the way, butter all the way! My husband is a chemical engineer and won't touch man made spreads! He knows what goes in them and understands the process involved! Urghhhh!

[DaddyzGrl]

I understand how you feel. I am in the same boat. So I guess we can paddle together. I hate going even to church just to hear you have gained a little, huh. At least I am in the right place for prayer when I consider slapping the insensitivity out of the person. I am trying to eat chocolate greek yogurt, when I can keep it down. I am sorry, but I do understand. More than my words can convey. I wish you continued success as we forage through. Best wishes.

[Lorska1]

Healthy or otherwise, being bothered with weight problems is a constant slog and psychologically exhausting....trust me, I know only too well! Patronising people with a lack of understanding really annoy me (I do try to let it go over my head...).

I picked up my new puppy on Monday and the breeder asked the worst question possible "when are you due?!" which was upsetting, but I made out I wasn't bothered. It was hard not to let it upset me, especially when I'm infertile due to my lupus/cerebral vasculitis and fat due to exhaustion and medication. I say fat, but I'm a size 18 which is about the size of the average uk female. Why do we do it to ourselves?

We need to start praising ourselves for who we are, how beautiful we look, and what we are as people. I've definitely decided that this will be my new ethos.

I would see your GP about feeling down, I know I'm going to at my appointment on Thursday.

Good luck with everything xx

[SjogiBear in reply to Lorska1]

Best of luck with your new pup - hope it's not too exhausting. Believe me, it's very much like being a new mum with lack of sleep and toileting issues! Hope your appointment goes well too - you are right that a lot of us need to learn to love ourselves again. I think it must have a lot to do with the fact that we feel that we have been badly let down by our bodies not being 'normal'. xxx

[Lorska1 in reply to SjogiBear]

Totally exhausting but rewarding. So far I'm loving it. My husband is coming to the appointment in case I forget anything and so the gp gets an understanding of how bad it is, so thank you. Feeling let down by my body but also like I'm letting others down...not nice but I'm sure we'll all get there xx

[Wendy39 in reply to Lorska1]

Great response. I didn't realise that lupus & cerebral vasculitis could make you infertile. Obviously knew Hughes caused pregnancy issues but that was it. Bless you. You are very right. We are all strong women who are much more than a size!!!! We are survivors too.

[Lorska1 in reply to Wendy39]

They don't know exactly what has happened but hey ho xx

[Wendy39 in reply to Lorska1]

I'm sure that's not easy to deal with, whatever has caused it, especially when people make hurtful comments about size and being pregnant. I'm sorry that you've not been able to have children. x

[Lorska1 in reply to Wendy39]

Thank you Wendy39, that's really kind xx

[SjogiBear in reply to Lorska1]

We struggled to have children so I can begin to understand in part what you must have gone through with that. Apparently my parents were told that I would not be able to have children (I got ill at 16) but they never told me this. I know that for me part of the problem was sticky blood and dodgy antibodies plus a host of gynae stuff that is probably autoimmune related (PCOS, endometriosis & fibroids).

It's a horrible feeling wanting something that you know you cannot have and then to have insensitive comments aimed at you, albeit unintentionally, just compounds everything.

Sending you a big virtual gentle hug x

[Lorska1 in reply to SjogiBear]

Sorry to hear you're in the same boat as me. Thank you for lovely comments. Big hugs back xx

[SjogiBear in reply to Lorska1]

I'm one of the lucky ones Lorska so not in the same place you are - it took a long time and a lot of heartache but despite what they'd said, I have got two children 6 years apart. I was helped by Professor Lesley Reagan's Recurrent Miscarriage Clinic at St Mary's Hospital in London. With my second child we only found out we were expecting after being told it was virtually impossible and I was filling out forms for adoption and had to confirm that I was definitely not expecting. Never thought it would happen.

[Lorska1 in reply to SjogiBear]

That is fantastic to hear ShogiBear! I really am pleased for you xx

[DaddyzGrl in reply to Lorska1]

You are awesome. I am proud of you. You have done something that I have never been able to do. Hide my feelings. If I didn't say it, then my body language would rat me out. Besides, your precious new puppy doesn't see 'weight' . He see that he can't 'wait' to be with you. Best wishes.

[ukgospeldiva]

Red flag. Do you have a digital thermometer to hand or could get one from the pound shop?

You need to take your temp first thing in the morning, lunch, mid afternoon, evening and bed. For a week.

You need to keep a pocket book record of this and here's why.

I too have s.l.e.

I descovered just before i developed Lupus, that I had a thickening in two spots in my thyroid, the butterfly shaped (of course it would be) gland where your Adams apple is.

That was last December2016 and after a scan for cancer check, nothing was mentioned or suggested. By Easter though I developed Photosensitivity and had my first 'full on' lupus flare.

I took photos as I was developing the rash, repeatedly and it clearly shows the area that is the thyroid is being attacked. It's part of that dammed rash.

Having a thyroid disorder is a common side effect of lupus.

With that comes the inability to LOOSE WEIGHT, feeling tired, some times heart palpitations,hair loss, nails that break, fungal infections, Raynauds, feeling more cold, increase susceptibility to infection as your immune system is compromised and as it's a hormone imbalance,an increased in appetite as the body trust to 'counter ballance' the fatigue.

See the correlation between the two?

The lowest acceptable body temperature is 36.5 I believe. You can Google this.

I've been taking mine and they range now between 35.7+36.5.

So I need to to back myself now to get referred to endocrinology.

I cut out sugar,processed foods and fat over a year ago from my eating plan, went through my cupboards and threw out anything with sucrose or beet sugars in. And there was a lot! And have slowly lost about 3 stone. Despite the thyroid.

Best wishes for your increase in health.

X

[leslieliesel]

I am so sad that you are feeling like this...it is scary isn't it xoxoxo