Hey everyone, this may be a long post but please bare with me
So....I've been diagnosed with anitphosphilipid syndrome since 2013. ( late miscarriage, multiple dvts and pe's)
I've just kind of carried on and pushed through the pain and fatigue etc but I'm now in a position where I have developed anxiety and depression due to being in pain 24/7 and exhausted to the point of collapse. I have a 5 year old who just started school as well as a part time job cleaning a school.
I'm no longer able to work and had to hand in my notice at work as I'm at breaking point physically with pain in my legs and feet and mentally with the stress. Although I've been reassured by citizens advice and universal credits that I cant be penalised for giving up work as long as I provide a 'fit note' from my gp I'm terrified that I'm going to be financially crippled as I have some debt and no savings.
I have my tribunal for pip next month but worried I wont get it.
My plan was to take 6 months off to sort my health out before returning to work as I'm only 27 but I've worked since the age of 14 and I dont want to quit altogether.
So basically what I'm wondering Is has anyone else had to give up work and has it worked out for you?
I cant keep living like this, I need to take time out but I'm scared that this is going to be my reality for the rest of my life.
Thankyou for reading this, any help would be appreciated.
Jazz.
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JAZZYMIN92
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You have to take care of you first or you wont be able to care for anything else adequately, good luck. Been there done that and it is a huge adjustment- albeit- not an easy one! Take care of you and you will feel better for it. Best of luck with the finances.
A 5yo can be hard going and add to your fatigue! Do you have a decent GP/Specialist who really understands this condition? As you may have read on here no two people feel well taking the same medicine. If your INR's are too low or too high can make a huge difference to how you feel. There are many that have had to argue with their doctors for a level that suits them-not an easy thing to do when you are feeling under the weather. tell us a little more about yourself and the very knowledgeable Admins on here can help you.
Hi, if you are UK based get yourself a referral to a good Rheumatologist team, I can personally vouch for Prof Caroline Gordon’s team at City Hospital Birmingham, you can be referred there from anywhere but it’s probably easier travel wise if you live in the Midlands. A good rheumatologist will make sure you are not developing/have developed additional autoimmune conditions which are affecting your health.
You are absolutely right to take some time to prioritise your health, it’s scary to stop working but it’s not permanent and time away means you can re-evaluate what type of job will suit your health and family the best.
Hi Jazz, you may feel everything is against you at the moment, please feel free to rant and share with us. All of us have been there at some point in our lives.
Have you got a good understanding GP? Time also to see an APS specialist if you haven't already? Have your bloods been checked recently?
You mention you hate giving up work, but you are not, looking after a 5 year, is a full time job and you are doing wonderfully, especially with your day to day pain and depression. With him now going to school, I agree with you, time to give yourself a break and a rest, a few hours a day for a few months, will give you chance to recharge your batteries.
As you are already in touch with Citizens advice, have you and if not yet, go through your money worries with a debt councillor? This can be really helpful to reduce interest charges and get repayment plans in place, which can take some of the burden off you.
I'm sure your worrying about your PIP assessment, is there someone you can take with you for support? They can be scary, your genuine medical records will be available and they will see your anxiety in its self. Just be yourself and honest, but I know my words won't help you, you'll just be glad it's over, one way or another.
Keep talking to us, communication with people who understand, just might help you feel a bit better about yourself. Go and see your GP and ask to see your specialist, your health is important and you need to see that light at the end of the tunnel. x
Bless you, I have been in exactly your position and it was very scary. I had a seven year old and was in my thirties. I had miscarriage, PE and fatigue and tried and tried to keep going. In the end I made the scary decision to stop work as I couldn't go on. I went sick from work rather than hand in my notice and it was genuine as I was ill. I got six months pay and then another six months half pay and after that year went straight on to incapacity benefit. My GP helped with all of this. What I found was that after three years I was ready and fit enough to return to work. It was the best decision for me as I needed that break to get well. What I also found was there were so many things I could cut back on. I realised that I was running a car and all that goes with that. Lunches, coffee's, clothes for work. I soon realised that once I didn't have to pay tax etc as well as all the savings the loss of earnings was not as bad as I thought and the benefit of rest and what it does for your mind state was worth it. You end up in a better place mentally to manage the loss of earnings and find ways to cut back. You are happier and have more time for your family. It was lovely for my son to have Mum at home when he got back from school.
I hope it works out as well for you. It is scary but embrace it and get yourself as well as you can. You have paid your tax, national insurance etc and this is what it is for.
Ditto to all the above advice and support. I will add that time " off " (there is no real time off raising a young'en) also gives you space to learn how to listen to your own body. Your body knows what is wrong and what you need to eat and do to feel better. But in the 21st Century hassle of our daily lives many of us lose the ability to listen to our inner selves. If this is a new idea or practice, you might try and use some of your new free" time to meditate, pray, center, and get in touch with yourself. I know that in my case, adding that discipline has helped me a lot - not just mentally, but also physically.
Thankyou to all those who have replied, i'm feeling much less worried this morning.
In response to some of the comments;
I do not have a GP who knows much about my condition as every GP visit is with a different doctor, I do have a hematology consultant however every time I try to see her at my appointments she is always running late and I end up seeing a different doctor who has no idea what I've already tried or even what issues I'm facing, the closest specialist is in brighton I believe but wouldn't know where to start getting a referral for him....
The pain in my joints, feet etc is manageable with pain killers however I have post thrombotic syndrome in my left leg which causes swelling that is so painful it feels as though the bone is bending or breaking when I walk, I also have fibromyalgia and lupus which combined with what they think is arthritis in my left knee is causing extreme pain in the leg and would honestly truly wish they would cut off but they wont......my physio has referred me to the gym for aqua aerobics etc, being in the water does help alot but I'm too tired so I like to just lay in the water and stare at the ceiling for an hour 😂
I've decided to just see what happens in regards to finances, I've been in worse situations before and will just take each day as it comes.
Oh and also I have weekly blood test as my INR wont stay stable due to my size and other medications so I know it's ok as my range is 4-5 and it was on 4.8 last week.
I am so sorry to read how understandably distressed you are feeling. There are 3 main issues:
First, your physical state and frankly, it is unacceptable to e treated i this way. You are entitled to see the Consultant. In the next appointment, explain and state clearly that you need to see the specialist. No doubt you might be fobbed off, but remain calm and insist. You have been seeing junior doctors who are doing their clinical rotations and probably know less than you.
I am not clear whether you have SLE. If so, you need to see a rheumatologist who specialises in SLE. From your description, they need to determine what is causing the acute pain in the leg.
Second, your financial worries, which I cannot advise other than to seek help with Citizens Advice or how to get help legal help for free.
Third, is the anxiety and depression, which is understandable, given your situation. I would recommend you ask your doctor/GP for counselling. Don't dismiss it because the other points seem more important. I cannot stress how important it is for your emotional well-being, with your 5 year old child.
Thanks for your reply, I am due to see my consultant in december, I usually see her every 8 weeks however as I mixed up my appointment date in july and didn't attend I was told the next appointment wont be until december. I will try and push for an earlier appointment and get a referral to the specialist....
The anxiety and depression is being dealt with and I have been prescribed sertraline? Also called zoloft I believe, as he was worried about it reacting with my warfarin hes made an appointment in 3 weeks time to see him and discuss it further.
The SLE I was told I have is up in the air as everytime I've discussed it they say it isn't official as I have had 1 positive test, 1 borderline and 1 negative and in their words "because of the negative test we are unsure" so not sure what will happen with that.
I always take my mum with me to any appointment as I find it hard to remember everything discussed as my brain is always very foggy and memory is a struggle for me.
The financial worries are just worries and nothing more, I'm sure it will all be fine and just a stresser for my anxiety.
The fatigue with this condition and pain can also be unbearable at times with flares and things, I often enclose this paper, as it is relevant: the-rheumatologist.org/arti...
I will also add that my conditions were getting worse and worse a few years back now, my fatigue was totally unmanageable let alone everything else. One thing I did do was to order my own private tests to look at my Thyroid and my B12 as often the testing is very limited, My GP found my vitamin D and my Ferritin to be low and I found out that my Folate was low and my B12 and my Thyroid was not working properly, when I corrected all of that I was then much better, I have many conditions, but having these things out of kilter made it all so much worse.
Yes, in 1992 at age 44 I retired from a local hospital where I was a registered dietitian.
I received disability retirement from the hospital. I had 3 kids at that time, 14 year old son, 12 year old son, and 7 year old daughter. I realized I had a health problem 4 years earlier but tried to keep going. It was impossible.
I guess the important thing is to be sure you are being treated medically as best you can. That alone will let you know how well you can function. Believe me, that is easier said than done. An excellent treatment plan is what you need from knowledgeable doctors you trust.
I have journeyed this path for over 20 years. Last year when symptoms were increasing in severity I came acrossDr Gundry's Plant Paradox. He explained how plant lectins (found in such foods as rice,wheat, beans etc can tear your gut lining and allow toxins into your bloodstream -and so cause brain fog, headaches, joint pains,....
I have been following this change in what we eat for about a year (not fanatically or swallowing all the 'wonder' pills he developes) We have changed potatoes for sweet potatoes, white bread instead of those wonderful grain &dead breads, no longer eat nightshade family plants such as peas,beans but eat loads of root vegetables and kale,spinach and gave away all my sunflower oil and rapeseed oil and now cook with loads of olive and almond oils. These are expensive so I buy when sales are on....
I feel like I am starting to live life again.
I also know that while God hasn't healed me despite prayer, I do know that when my husband prays regarding a particular symptom rearing it'ugly head God has either eased it off or given me the grace to function despite it.
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