Since being (finally) diagnosed last January - I'm slowly deteriorating. No major organ damage but the fatigue, aches and pains, I get numbness/tingling, balance problems and my memory is just awful! This all flares up and calms down - but my quality of life has changed drastically - in ONE year ! No -one really understands how I have to manage this somehow every single day - it's a constant challenge. I can't do half as much as I used to do with my lil boy (age 10) who luckily is at an age where he can at least get on with things now. I still work full-time because I have a mortgage to pay. I can't afford to stop. Feel very lonely and read lots of posts where people have lovely husbands looking after them - and I am very happy for them, don't get me wrong, they are blessed - but I don't have anyone to look after me. Feeling sad and worried
Single mum, worried what will happen if this Lupu... - LUPUS UK
I'm sorry to read that you are feeling down at the moment. Have you got a good relationship with your GP? Maybe you could have a chat with them and explain how you are feeling? Or if you have a close relative or friend i would recommend confiding in them if you can.
If you think it would help i can put you in touch with one of our contacts who is living with lupus within your area, just give me a quick email and i can give you their details. Sometimes speaking with someone who also lives with lupus can help, they may even know of a support group that you could go along to.
Obviously, please feel free to use this forum as much as you need, but if there is anything i can do for you please do let me know. email@example.com
Hi Hayley - many thanks for your kind response - I have emailed you. Kind Regards SML
What medication are you on, it sounds to me as if it needs tweaking. Don't stay as you are, go back and ask for alternatives or higher dosage, you should feel much better by now.
Thanks Purpletop - you are right - that's exactly what the neurologist has said - so I'm going back to the rheumatologist on Thursday to change my meds. I'm dreading going on something stronger but got to do what is best. Doesn't feel nice when meds control your life
It is better than not having a life at all, try to think of it positively.
I felt so sad reading your post and my heart goes out to you. I know how challenging this illness can be and a massive change of lifestyle that I don't think we ever really become accustomed to. I too only got diagnosed a year ago and although I have a husband he works very long shifts so most the time I too feel like a single mum and I know how hard it is. I have no family support and when my husbands working I just have to get on with it the best I can. My son is 9 so luckily he can amuse himself when I'm really sick and they adapt to change much quicker than we do. Do you have any family support or a good circle of friends? I too suffer from everything you've described and it's just awful! I don't really have much advice to offer other than listen to your body, rest whenever you can and remember that their's always this site when you need advice, support or just a good old vent to people who understand what your going through. My thoughts are with you, be strong and try to remain positive. Sarah X
Thank you for your kind message.
I'm sorry also to hear of your situation - it is hard when there is little support. I do have a sister and brother - and a some close friends but I don't like to worry my family too much and to be honest, as much as I've tried to educate my friends, they just don't seem to get it. I get to the point, that i think people think I'm making it up! They don't realise that if i actually make it to a meal out - that I've probably slept for 2-3 hours before hand, in order to go - and if I do something strenuous one day - I know that it will prob knock me out the next day - and they don't know that I've already accounted for that! It is tough. Very lonely disease. I am so glad for this site - you guys who really understand and are going through the same things - My love to you and everyone else - I'm positive today - and feeling stronger. Let's still count our blessings and be thankful for everything we can still do. Keep in touch xxx
Here here to all of that. My mother in law still thinks that a few paracetamols will sort me out, ooh if only and even when I was admitted into hospital she still said "but you look fine" soo frustrating. That's what I love about this site, people understand even the weird and waccy symptoms we get when your Dr looks at you a bit strange, then you post on here and lots of people suffer the same. I would love to meet up with a fellow sufferer for chats and support. I live in Cardiff, South Wales, are you by any chance anywhere near? Failing that I'd still love to stay in touch.
Look after yourself and try not to worry. Sarah X
We have a South Wales Lupus Support Group that have meetings in Cardiff. You can find out more details on their website at southwaleslupus.btik.com/
Thank you for the Web address, just been on it now and it's unavailable at the mo so I'll check again tomorrow. Many thanks.
Hi Sezzie, ive had bad couple of days. No energy to write. Got rheumy appointment this afternoon then will figure out how to email you and others. We should defo support each other; thank you for asking. Hope u r ok. Chin up, speak very soon xx
I'm sorry to hear you're not too good at the moment. Have you seen your rheumy yet and if so how did you get on? Fingers crossed for you hun, keep me posted and I hope you feel better soon. X
Hi, just wanted to echo purpletop really. Do your Drs/rheumy, know that your treatment is still not right for you ??? As we have said on this site before, you have to keep them informed, even bringing forward appts sometimes. They don't know otherwise, and have far too many patients to wonder how you are doing.!!!!! We are all here for you to let off steam if you need to, but the fact remains that you need to be as well as is possible because of your commitments. Take care.
Thank you for your kind message.
I am seeing my Rheumy on Thursday to change my meds. Not happy that I'm going to have to go on something stronger - that frightens me - but if it will help, then I must do what I can. I certainly will keep in touch - thanking god for this website - the support is fantastic - Thank you!
I know that feeling. My rheumy has been contemplating starting me on methotrexate for a few months now and I'm seeing him on the 10th of March and in light of yet another nasty flare I think that will be the day. It is frightening but with lupus it's all about trial and error and hopefully you will feel much better on something new.
Good luck and keep me posted as to how you get on. P's apologises for any mistakes, my brain is like mush at the moment! Lupus fog yet another joyous symptom we suffer from. X
Hi singlemum...... I can only echo what has been said above but also to say I do take my hat off to you for managing a full time job and combining motherhood with lupus....all no easy feat. I'm not surprised that you feel low. I can only say keep in contact with us on here......the one thing we all have in common is that we are all dealing with the same daily issues. I know when I'm in a flare up I don't even seem to see the obvious such as I can go back to health professionals for more help/change of meds etc. Just a thought......is there any way you could reduce your hours by comprising a few extra over the other days...say work Mon Tue, day off, Thur and then Fri then weekend. It may be that on the day off you can gather some strength to keep you going. I know a lot of the time this sort of thing is impossible but I thought it maybe worth a thought. Aside from that thinking of you and what you are doing is amazing. xx
Thank you so much for your kind message
I appreciate that so many people took the time to write to me - and so glad I found this website!
Your message has made me feel happy and proud for my achievements - and yes it's tough but I won't be beaten easily!! (ask me on a bad day!!). Thinking about Lupus is slightly starting to take over my life though - need to try to stop feeling like I'm a lupus sufferer rather than a person - that's hard right now. Your suggestion re working hours is a great one. I have considered that actually - and am doing OK with working flexibly right now - Im very blessed to be working for a large organisation - who actually allow me to work flexibly. I do a global role - which means i have to have early and sometimes late calls so it works perfectly for me to have a sleep during the day and work around that - and i work from home a lot when i need to. If they were not as understanding or supportive, then I would not have been able to work in the last year. I literally slept away 2013 - it was awful. The downside to working like this is that i never switch off coz I'm always making up the time. Makes the days actually longer! My son recently drew a picture of me - sitting on the sofa - with my laptop. He says "mummy, all you do is sleep and work"! What can I say to that !! gone are the days of holidays to centreparcs - so quickly I'm unable to do much with him - that is a great frustration. Anyway, I hope you are keeping well and positive x
Hi hon u r exactly like me in all worries only my child is 16. I know we not allowed to email personally but jacnk2103@ btinternet.com. Maybe we can text and email to support each other. Xxxx jacqui
jacclaire-you can email through your msg box on here.
Hi there - I will email you - thanks Bam1993 for letting us know about msg box..
Hi Jacqui, sorry no message for a while, i have had tough couple of days. Im seeing my rheumy this afternoon, with my long list! Starting to thinl he will dread me and my lists!!!! ! I will figure out this email thing on here a little later. Just havent had energy, how rubbish is that? Anyway, i hope u r doing ok? Definately looking forward to keeping in touch and supporting each other. Its really helpful to know others get it! Speak very soon xx
I am sorry you are struggling so much, you have so much to cope with!. Just a thought for you, working full- time must be tough, if you could reduce your hours you could go to your local Citizen's Advice Bureau who would do a benefits check to see what help you could get,specially as you have a young child. Hope your health improves soon.X
Hi misty14 - thank you so much for your msg. I think that one day I'll have to take your great advice but I'm not ready to give in and work part-time yet! Will keep you posted - this is getting worse too quickly for my liking, so I may need to give in soon. I hope you are keeping well and positive too xx
Hi, so sorry to hear you are lonely and depressed. You know there is help out there if you want it. Have you contacted Social Services yet or Citizens Advice because I am sure they can help you with advice. I have system lupus but I take Steroids as well as other tablets, otherwise I wouldn't be able to function. I am seeing a new Rheumy now who has been very helpful since I gave her a fright last November. I took myself off the steroids, slowly over a three month period and in doing so made my condition worse. I was admitted into hospital with very low blood platelets and was given a high dose of steroids etc. Like you I was in pain, with stiffness of joints and really not able to do much. Without the steroids I wouldn't be able to function well. I know she will lover the dose so that will make things better. Have you seen a Rhuematologist because you must.
Thank you so much for your kind message. I'm blessed to have so many people who have taken the time to write to me.
I have no idea what will happen in the event that i can't work -havent ever claimed benefits and would not know where to start. I'm putting it off as long as I can really.
So sorry to hear you are on Steroids and other meds. How long have you been suffering before you went onto Meds? Do you mind me asking why they put you on steroids - what symptoms got so bad and how long did it take? Did you put on weight and have other side effects with the steroids? I ask because I feel this is where I'm heading also - slowly but surely this is getting worse and I need to educate myself on what to look out for. You sound brave and wise - you must continue to do that. Let's support one another on this site through good and bad days. Are you OK on your current steroid level now - are you in pain or has it helped? Sending hugs. x
Thank you all for such kindness - and for taking the time to respond to my post. I am very glad I found this site.
Feeling more positive today - I'm having a relatively good day! I've just been through all sorts of tests over last few weeks - with a Neurologist. Results were all normal (Brain MRI, Lumbar Puncture..) and he told me there is no Central Nervous System involvement - and has referred me back to my Rheumatologist - who I am seeing on Thursday (couldn't get an earlier appointment) to change my meds from Hydroxychloroquine to something called Immunosuppressants - not sure which one the Rheumy will recommend. I hope they take away the awful new symptoms relating to memory, balance and numbness - it's very strange as when i look up all these symptoms, they point to CNS involvement - but apparently it's "just" Lupus that can do all this even without that complication. I'm confused about exactly what Lupus is going to continue doing to my body as when you first read on it, there are a basic list of symptoms which seem clear - and then the organ involvement which makes things complex - I mistakenly didn't take this seriously upon diagnosis last year. Now I'm frightened as anything!! Remaining positive though - I'm having a good day and learning to be thankful for each of those. I just got back from having a blood test and 30 mins trip - caused me soooo much pain with my fingers - Raynaud's - never had so much pain before. I'm taking Losartan for it but it doesn't seem to be helping .. anyone have any ideas on this at all? Re work, thank you again for your kindness - I am a very determined person - been through quite a lot in life which I guess has made me strong through the years. I refuse to go part-time and let this beat me just yet. I have a great career and am hanging on to keeping a normal life for now .... but as the months go on, I do worry that soon I'll have to get realistic. Will stay full-time for as long as I possibly can - for me, it's about my son's future more than anything - also If I'm at home too much, I will just get down and think too much! xxxx
Good Luck for your Rheumy Appt. Let us know how you get on. I've been on quite a few immuno- suppressives so may be able to help. X
Sorry to hear of your difficulties.
Having experienced this from the other end, I was 12 when I got lupus and I had a single mum who did not like to ask for help. I am 47 now and mum is still alive and still does not ask for help when she needs it. She is unwell now and won't let anyone else help.
Please ask for help now, because lupus is made worse by stress and the stress of going through this alone could actually make things much worse.
Financially, you may be able to get help with council tax payment, ask your council for an application form, also you can probably get help with health costs, ask at the pharmacy for a help with health costs application form, so you can get help with free prescriptions and costs of dentists etc.
Your GP may be able to advise on stress clinics or an occupational therapist, who can advise on pacing yourself and emotional aspects of coping with chronic illness.
Be clear to your family, sister brother and close friends, what is going on, give them leaflets on lupus if necessary, because it would be worse if you got more ill and they had to deal with that.
My childhood would have been totally different of mu mum had not pushed other people away and tried to cope on her own. Due to what was going on there were some very bad things that happened, due to the stressful family dynamic, when people can't cope they do sometimes go into meltdown.
You can ask the family to look after your child at least a few hours a week so you can have a rest.
Also do you ever do batch cooking, cook for a few days supply and freeze portions. Get them out the fridge the night before.
Also do shopping online.
Repeat prescriptions- talk to the local chemist about the delivery service. They pickup from the GP, and deliver to your home.
There are lots of little things like this that can save you time and energy.
Big praise to you and the other single mums out there. I struggled during a flare when my little one was 3 years old. I asked for help and got little. The Health visitor was less than helpful. I eventually hired a cleaner/home help (£20/week - worth missing that takeaway for) who has been amazing. I also now know about our local surestart centre who would have helped with some childcare. I don't need the help as much now - but when I saw your question I was hoping there would be lots of responses about resources for practical help.
Hope you get the medical help and the practical help that you need. I really hope someone arrives on the scene soon that looks after you. Till then, deep breaths and keep up the amazing work you do xx
Hi singlemumloopy, I thought Id reply as Im to a single Mum to a 5 year old son and a 20 yr old daughter. I too suffer badly with fatigue and tiredness. I gave my career up last September as I collapsed on the beach in the Summer (used to be a TA, but had a diploma in English Literature and Humanities) I was studying towards my degree to become a teacher. My health started to deteriorate a year ago too. I was diagnosed with Lupus through a biopsy but previous I had lost all my long hair. I then started to get problems Irritable Bowel, pain, headaches and dry throat. I have now lost my eyebrows and eyelashes, I have tightening of the muscles, sjogren's syndrome, Arthritis, spondylosis with nerve encroachment, Photosensitive, also had CN3 (precancerous cells) and am still being investigated. I am waiting for a lumbar puncture and see the Neurologist in a couple of weeks. My GP has referred me to a therapist to talk, so Im waiting to see someone from the wellbeing clinic. Its been extremely hard for me giving up the career Ive worked so hard to get for years and I loved so much ... but I just couldnt physically do it anymore. However, Im glad of the rest as I may have burnt myself out. I really do understand how tough it is, especially trying to fight everything alone. I was a healthy, fit and active person and had everything to look forward to in life then bam! knees give way and thought it was nothing serious. Ive now been signed off sick since September, I've problems with my muscles tightening (something new) apparently its in my thoracic area which is worse lol cant do much as its horrendous pain and chest muscles tighten and restricts my breathing. My son helps bless him. My daughter is working all hours so I rarely see her. I dont think there is a lot of help out there unless you get DLA (I have not applied) its for those who work and who can't ... it just gives you that little bit extra to maybe pay for someone to come in and help. The GP told me about it but I think you need to be fully diagnosed. I thought I say lastly that I share how you feel and to say your not alone. Our children keep us going and fighting ... stay strong ((hugs))
Sorry to read of your struggles. DLA is not for people who have worked. It's awarded purely on the grounds of how your illness affects your day to day life. I receive it. If you want to apply you have to state your health at it's worst and I recommend you do it thru your local Citizen's Advice Bureau who understand how the questions need to be answered! Good Luck X
Nurses are always at a surgery if you want a chat, chat to us, get to know us, and if you feel you need more help as in psychological ask your GP for a referral. i get very down as depression is a huge part of any illness, try to smile at least once a day and have positive thoughts.
If you don't like it change it, if its not working change it, we all have Lupus but we all react differently.
Take care and remember you are NOT alone in this!
I think that what you are achieving is unbelievable, and you are a real credit to your little boy, and family. It takes a lot of strength to get up everyday, and fight to get to an evening, and manage to fit in what you do. I doff my hat to you, and send a very large hug.X. It is not surprising you feel the way you do, and we are always available to chat, lend support, and suggest options. Like everyone above, I give you my support and sympathy, understanding what you are having to go through, and am here. I think, as above, the gp is a definite first call, and have a friend to confide in. Take them with you to your Gp for support, and also to give a second account of your problems, which also may help reinforce to your gp the seriousness of your predicament.
Be as strong as you can be, but do not hide how you feel. It is important to express yourself. I think you will find the support is overwhelming.
You take carex
Even though I am half a world away I had to let you know how touched I was by your post. I have a relatively mild case of lupus and over the years have now developed fibromyalgia which I find myself struggling with more than the lupus which I had been keeping in check with azathioprine and hydrochloroquine. Despite having to make many lifestyle changes I was relatively at peace with my situation until a case of severe cellulitis sent me in and out of the hospital twice and has sent me into a tailspin of worry and self-doubt about the choices I have made to handle my disease conditions. The truth is we are left with some very difficult choices without easy answers and the medical community just doesn't know enough to support us in the way they should and would probably like to. As a mom of two boys I found myself holding it together while in the depths if my fever /chills and vomiting I had as a result of my infection. It wasn't until the last couple days after getting home that I feel like I've fallen apart- my anxiety is through the roof and I keep thinking what if next time I don't make it home? The fact is you and I will both do everything we can to be there for our children and perhaps we will raise them to be more compassionate and patient with those with "invisible" disease- maybe it will be our daughters and sons who will make the breakthrough we need if not to cure the conditions we suffer from but to make it easier to live with them. Just try to remember that every day will not necessarily be more trying than the next even when it seems that is the pattern. I've struggled with auto immune disease for almost ten years now ( I think :)) and every once in a while I have a glorious shining pain free day- it will happen, just try to relax and adjust your expectations SuperMom with Lupus does act and think differently than regular SuperMom but that doesn't make her any less super.
Singlemumloopy....I can understand your fears and pain. I lost my mom when I was 11 to an inflammatory disease, colitis. My entire life I have been living in fear of this happening to me. My daughters are 12 and 14 now, and I have just been recently diagnosed with lupus. I have had bad days, but I am considered low end lupus, so I manage ok without meds. I know I may not be allowed to write this, but I have done a lot of praying and God has directed me to enzymes. I know money is probably tight with your being a single mom ( I have a good friend who is a single mom, and she had no food in her frig recently.) , but I have been taking digestive enzymes for 4 days now and feel pretty good. My night sweats are more manageable and I am sleeping better, my joint pain and ear pain is manageable. My energy levels are also better. The enzymes don't cure disease or lupus, but make the body work better. The man at a lecture says that they save the body energy by helping us to break down food that we may be allergic to , or as we get older we are not producing these enzymes anymore.
It is almost a miracle. I see that only one person read my post and that many may not believe this could be helpful. You can only try for yourself and see. Check out my post on enzymes...read up on it. At the least it is some kind of hope of feeling better. Take care of yourself...your children will start to take care of you as they get a little older. Both my daughters see what's going on and I don't hide it from them. I try to empower them with finding solutions and taking action instead of letting it just happen and not doing anything. I learned this from my older brother. Knowledge is power. Hope you are doing ok today!
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