To hate what I’ve become

Can I ask if you don't mind what your condition is? I understand if you dont want to say. You sound like it has affected you in a similar way to how mine affected me mentally, and i really related to all you said in your reply, especially about the way having a condition in your 30s and 40s is so hard.

Would you qualify for wegovy on the NHS?

I'm so sorry OP 😢 That sounds really tough.

I'm am example of someone who's the same age as you, perimenopausal, and had a lot of health issues over the past decade. Like you, it's safe to say that it's changed me as a result, and made me feel pretty depressed and not in control of my body or health 😵‍💫😟

A decade ago, I had a head injury and post concussion syndrome before being injured permanently by an off label antipsychotic prescribed for severe insomnia and anxiety. It gave me a permanent neurological involuntary movement disorder called tardive dyskinesia that is a bit like Tourette's and Parkinson's disease combined and is very bizarre. My body is changed permanently as a result, and I am now very sensitive to medication side effects, especially when somd can make my movement disorder symptoms worse 😢

As a result, I've found the symptoms of perimenopause really tough, much tougher than I guess i anticipated them being. Horrible gingivitis, worse migraines, and dreadful brain fog and panic attacks. I'm sure my whole body is just totally different to when I was a young, extremely fit younger woman, running half marathons with no worries.

Bit by bit, I've had to accept that I am a different person. My neurological movement disorder is crappy, really weird movements like my tongue and mouth moving on their own, and it's made me feel horrible and freaky at times. But it's also made me stronger through the struggles, more empathetic of those with chronic illness, and certainly very sympathetic to those with severe depression and anxiety. I had a horrible breakdown after my concussion (and also had three other concussions), so i understand how debilitating mental health problems can be.

I think you should try to be kinder to yourself. I'm sure you are being very stoical, doing the best you can under the circumstances, and need to celebrate all the good days you have.

Sending you huge hugs. I understand and think you'll be able to be ok ❤️

Oh op, this was heart-breaking to read. I am so glad you reached out and that some posters might have some good, practical advice, because your GP sounds horrific.

The teenagers were revolting. I'm not going to say ignore them because I can understand how the taunting would have felt, but really they are not worth the headspace.

Bodies can be treacherous things to good people.

I don't want to minimise your struggle by having trite suggestions, but could you start by trying just one thing every day to move towards a better situation. I realise a lot of it is stuff you have no control over, but even just starting with a few strengthening exercises from home, or an extra glass of water a day for hydration - little things that can make us feel better - and build up. Just anything manageable, however small, to help you feel you are moving forward, not getting mired down.

And do push for a good gp. You have not had the professionalism and kindness you deserve.

Don't hate yourself: you honestly sound as though you are coping with such a lot, and let yourself feel proud of that.

Sorry OP, that's proper tough going. I hear you over changing over the time, similar here with ongoing issues and daily rubbish wears down even the most positive of us.

I've not read everything, apologies but wondered if you were under a specialist pain clinic? Not just one that wants to give you codeine or tramadol (both been proven not to work on nerve pain). Nerve block injections I had for chronic pelvic pain and they for me at least, took away about 90% of the pain over a set of 3 and can be repeated over a few years. They can be offered but the skills of the pain clinician is really important, as well as knowing that a set of 3 is the best way to really get hold of it, whereas a lot offer just the one.

If in the Londonish area, the doc I saw only does private now as he's done his long stint in the NHS, but happy to pass on his name via message if you want. He was by far the best doctor I have ever had and really knows his stuff and no lie, he gave me back my life somewhat.

Take good care.

Hi op, I just wanted to reach out with some empathy. I was diagnosed with a life changing condition when I was 36. It's so hard! I really think there's a unique shitness to getting really ill in your 30s/40s, which is hard for other people to understand. People who say 'you just need to accept your lot' - okay if I was maybe 15-20 years older it could be a slightly easier pill to swallow, but I'm not surrounded by a peer group going through a similar thing (my condition is also very rare).

I'm now 10 years into the journey and lessons for me have been:

Nutrition and sleep are everything- without these I'm not giving myself the best chance..I don't need to be perfect but 80% is a good balance.

Finding a balance with exercise is key - rip up the rule book and devise what works for you. My honest opinion is that there's always something you can do, be consistent with it 3 x a week, and then just build on it, when it gets boring switch it up or go up a level.

Don't give up - I went to netball and had to leave as I couldn't keep up. But I then discovered a sport called walking netball and its fabulous.

Highly recommend walking pads, I got the Urevo on Amazon and its ace.

Also if you have a Better You gym near you, you can apply for a National Disability card (with a letter from your GP) and the card gives you membership nationwide for just £26 a month. With the ND card, I also got a Carers Card for the National Trust, so I can take anyone with me for free, no ID required for them. I'm happy to take anything I can that will help me stay fit.

I've probably been on / off depressed since the diagnosis but can honestly say I think I'm now in a better place.

My local talking therapies does a group course called Living with a Chronic Health Condition - there may be something similar in your area.

I also had therapy to help me with the really hard stuff, the parts of my condition that I really struggle to live with. You should be able to keep referring yourself for CBT.

I'm so sorry. 💐 Life can be so shit and cruel for no reason.

Second this. I have chronic illnesses and getting very little support from the nhs and chatgpt has been a huge help in helping me understand what’s going on and come up with a plan of what to do next

I would agree. I hope you find some who treats you with some compassion. That sounds really hard, sending you a hug x

Do you have a break from the injections until your illness has cleared up? Just checking as my partner wasn’t aware to begin with that he was meant to do this.

I feel safer on a treadmill than a walking pad as it has the arms on either side for balance.

Would you be suitable for weight loss injections with your other medications?

Is there a shopping centre near where you live where you can get yours steps in, and sit and rest when you need to? It sounds like you are really struggling but please don’t give up on yourself. Also your doctor sounds like a bitchy cow. HRT should help with the joint pain, and as crazy as it sounds a grounding mat improved both my sleep and joint pain as well. Worth a try!

Sounds tough OP and those kids were awful. Would you feel comfortable popping a chair at the front of your house and doing some shuttle walks maybe starting between your house to one or two doors down, back yours for a sit and then repeat? Maybe see if you can build up to walking more houses in between needing to come back for a break?

it will be hard going to begin with but you will certainly begin to see the benefits. Wishing you well with this, OP!

Our local gym is a social enterprise and they have a scheme (I think it's linked with health services) where you can get an advisor to help you figure out fitness/using equipment if you have a health condition. It's a bit like having a personal trainer but free with specialist guidance and for a limited number of sessions. Could be worth seeing if there are any schemes like that in your area?
This is the scheme
https://www.better.org.uk/what-we-offer/activities/healthwise

Have you come across the sitting/lying/low mobility exercises? I get adverts for a lot of them (possibly due to age and general infirmity) and they look good. I think one is called lazy fit or something 🙄. I'm also very low mobility and too limited to do them as I can't manage the weight of my limbs, but I've wondered about trying them if I could!

This was me a couple of years ago. I have IBD and also bowel prolapse. Exercise was so hard due to the constant need for toilet access, lower back pain from the prolapse etc. I was embarrassed and sad.

One day I just decided enough was enough. I started a calorie deficit diet. I also can’t eat whole fruits and vegs but can make lovely soups to get some goodness into my body. Calorie deficit means I can eat foods that agree with me. Once I’d started to lose the weight. I started walking on the treadmill at the gym. Then outside then I started some classes etc.

In the last year I’ve lost 5 & half stone. My bowels are the best they have been in a long time, my back pain has pretty much gone.

It’s been a long hard journey (and still not over) but worth every second. I feel like a different person.

Right, I might get flamed for this, but I'd download ChatGpt or similar and type in everything that's wrong, come up with some tips or suggestions for improvements you could make that might make your life a little better for you. I would second the treadmill. I got one from amazon a few months ago and I find it great, it was around £125 so not extortionate. With ChatGpt you can tweak your questions as you go and see if it throws up anything useful to you.

Where abouts are you based OP? There are personal trainers (not physios- PTs) who specialize in working with people who have disabilities - and will tailor the work outs and support to your particular needs. It’s not cheap but I think if you could pay for a block of 6 or 10 sessions to get specialist routines in place, and get your form sorted out, you would probably only spend about as much as you would on an annual gym membership, and get a lot more out of it.

Can you get a cheap treadmill for your home. If not there are loads of walking exercises on You Tube. I used Leslie Sansom walk for fitness just google Leslie Sansom. You can do it in your lounge with no equipment. Ignore the crappy teenagers and if you can (I know it is not easy) but get a new doctor.
You can do this.

Get yourself a walking pad - start with something on fb marketplace etc, grab something cheap and 2nd hand, see how you get on.

Oh yes and find a good and better GP and a decent counsellor and cut yourself some slack you are going well considering what life has thrown at you ! 💐

It sounds like you've been struggling a lot with not much support. I am so sorry to hear what a tough time it's been.

Can you get some more support, a therapist? It sounds very lonely. Sending you hugs.

What about a tread mill? Open window in the summer or outside on decking.
walk whilst you watch a nice tv programme?
positive affirmations etc on CD and listen all the time