Kids missing school and I’m the worst mum ever.

[Hagpie]

I need advice. My oldest used to have lots of tummy issues which meant she missed school. Last year it kind of just resolved itself which is great because doctors really didn’t know what was wrong.

I was thinking great! No more missed days ….and now I’m the problem. I have had such terrible pain and weakness in my joints particularly my wrists, knuckles and knees dating back to 2017. I mean like sometimes I cannot not lift a pillow or close the palms of my hands or walk because my leg will just buckle. When I am getting the baby out of bed I will sometimes scoot on my bum down the stairs.

I had gone to the doctors and they gave me some very helpful pills but by the time I got referred to a specialist, I was heavily pregnant. The doctor told me my symptoms were very worrying and the bones in my right hand were “softening.” However being pregnant lessened some of my symptoms and besides, she said she was too scared to touch me and none of the medicines she could give me were suitable for a pregnant person. Shortly after I gave birth we had to move but it was fine as my symptoms have only showed up for one or two days a year since then. Until December 2023.

So far in 2024 my children have missed about 6 days of school because of me. I just had a good cry because they’re doing so well in school and I feel like I’m ruining it. They missed today and might not be in tomorrow because I might not be capable of walking them to school. Their dad is at work for 6am and this is inflexible.

If it’s anything like last time, I’m about 18 months from another specialist appointment if I can ever get another GP appointment in the first place. I feel like a failure and it’s really embarrassing because on the outside I look incredibly fit and on good days, have jogged the school run. I just don’t know what to do and the kids don’t understand why mummy can’t grip a brush to do their hair some days.

Hi OP. I think this is my first ever post here. But I read your story and had to reply. I had a similar experience, made worse after having Covid, much milder than yours but I still recognise the feeling of failure, of frustration, pushing through and getting worse for it. There is so much in this space they do not understand, I never did get a diagnosis, but I started on Duloxetine which has been a godsend for the pain and for my mental health. Therapy also helps me manage my energy levels and accept I can't do as much, it's hard work giving up so much just to get through the day. I am not sure if this is something you have already tried but if not I would recommend it. I am so much better now I can do normal things again. This is no way to live and you need to fight for some support and answers. I hope you find them both x

Gosh you poor thing, that sounds dreadful.

Im glad things are going well for your DH and it sounds like the therapy is important for him and therefore all of you.

I hope you can get some assistance from the school and council. You should try and see the GP again and keep pushing and pushing until you get a diagnosis. I don’t know anything by about disability support etc but surely if you have a firm diagnosis of something that will help. There may also be a charity relating to the illness which may be able to give you support.

i would also ask on local Facebook groups. I’ve helped a local charity before where they often have loads of random medical equipment that people donate. There may be a local charity that could help with a mobility scooter or with getting the children to school.

Be open with the school so they understand what you’re up against.

It sounds like you are doing everything you can to keep life ticking over for your family, please don’t beat yourself up, be proud of yourself. Your quality of life is important too though so look after yourself too. Good luck.

Please apply for PIP. You are clearly not well and you need some support. i put it off for so long and it didn't affect anyone but me! I have a 3 year old and since my PIP was approved i've been able to continue working but on reduced hours and I have a mobility scooter from the allowance. I am 43 and was initially mortified at this however It has given me a new lease of life. I'm able to take my son to the park and be able to help him, he either sits on my k we or takes his balance bike. As a family we have managed so many more days out to farms and zoos and high streets i couldn't have managed before. I really hope you can get some help soon lovely x

Sorry if this has been mentioned but are you getting the limited capacity for work element of UC? If not, ask for an assessment!

Babes you can’t afford to be embarrassed. It is what it is and your kids need to go to school. You need to sort your shit out.
You can make calls from your bed. Call GP (not sure if you have to do Patches online now) and tell them the severity of what you’re living with. I sympathise with you.
Then contact council or school to see if there is a bus pick up service. If you explain to the school about your illness, they maybe able to help with a solution to get your kids there daily.
Mate I truly do sympathise with you but you have to try and take control of stuff now before it gets too out of hand.
Please don’t be embarrassed. You’re sick darling x good luck x

It is imperative that you get an urgent Gp appointment today. - even a phone call.
Ask them to read the letter from the previous specialist. Hopefully they will have made a diagnosis or helpful suggestion in that outpatient letter.
For example : if they thought you had an inflammatory arthritis and you are having a new flare then a course of medication may be all you need - eg anti-inflammatories or steroids

Update:

1. My doctor has referred me to a rheumatologist as he thinks it might be arthritis.
2. The same doctor also prescribed me some medicine that really worked before.
3. I never got a call back from the absence team but a teacher had said they will be making enquiries about how they can help me. She said there is help available.
4. After I type this I will be calling UC to see if I can get an assessment because I’m looking at these jobs I’m applying for and I don’t think I could show up everyday.
5. I feel a lot better today actually because of the help I got with the school runs from my mummy bestie and her amazing partner. Also DH is being as devoted as he was in the past so I’m a princess for the next 4 days.

I really needed you all and you really showed up for me. Thank you ❤️

Hey Hagpie. Great news. Well done.

Well done mama x

Good job, OP!

It sounds like you could be eligible for PIP (personal independence payments). You can apply for the form through the DWP. You would need to have a medical note from your Dr and keep a diary to show how it affects your day to day life.
It does sound as if this is affecting your life/your children’s lives enough that you may possibly qualify. Also you could call your local Citizens Advice and they can offer help with filing out the PIP form and offer more advice on if you could qualify.

this sounds like Fibromyalgia, chronic fatigue,body pain through out, waking with a really bad headache,disturbed sleep,tingling in hands and feet, unable to walk far, restless leg syndrome, depression to mention just a few. Sometimes Endometriosis and Fibromyalgia are often diagnosed together or misdiagnosed all together.Try asking your doctor for a referral to a pain clinic. I suffer with both and I know the pain is relentless.

I felt I couldn't wait the 2 years or whatever it is for an appt. It cost £100 for a private appt and was diagnosed immediately with rheumatoid arthritis as my bloods were crazy. Another £100 for follow up appt and started medication. Meanwhile I moved up the queue and got my NHS appt about a year later and now it's being managed.

I appreciate it's hard to stump up the cash. However RA is progressive and without medication it's highly progressive. Treatment sooner rather than later saves you from permanent disability. So if you have any means at all to go private, just to get you started, I advise it. It's your whole future at stake.

The NHS might be in a bad way, but of course you can get a GP appointment. You seem to have a chronic problem that will be on your records. You will get a specialist appointment, and you may be prioritised. Why haven't you started the process? Because you feel it's hopeless? It's not - take the first steps to looking after yourself and you will start to feel more able to get your children to school. Their education is not optional.

‘Of course you can get a GP appointment’ and thinking OP will get prioritisation for specialist appointments are two very overly optimistic and naive statements. This is coming from someone with multiple chronic conditions.

The NHS is non existent if the OP can't get a GPs appointment. Of course she can one.

Please call your GP surgery today to get the next one. If its a case of calling on the day, make that your priority. Its easy when you are unwell to be apathetic but please realise you need to take control of this.

I suppose the NHS is non-existent for many people nowadays then! What a stupid comment. Even when DD needed an urgent appointment they still couldn’t fit her in, lucky you if you’ve never experienced this.