Three years have gone and I've stood still

Hi iwas diagnosed with transverse myelitis 3 years ago, however due to my clinical symptoms the neurologist suspects I have ppms. I spent 8 weeks in hospital when I was diagnosed I had loss of feeling from chest down and was unable to walk . I now walk with a frame, but my life has stood still ,after discharge physio came to see me and gave me some exercises to do. Never saw him again . A social worker arranged for help with personal hygiene 1 hour per day which is very helpful. I never get dressed ,I just put a clean pair of pyjamas on . I only go out when I have a drs appointment. I think I’m just waiting to miraculously get better it is dawning on me that it’s not going to happen. I now can walk with a frame. My legs very stiff and extremely painful I’ve got oesophageal achalasia which is caused by damage to the vagus nerve which has made the muscle to my stomach go in to spasm so my food sits in my oesophagus for ages until its out of spasm. This causes me to vomit and when I’m asleep the contents of my oesophagus pouring out of my nose and I wake up choking having inhaled vomit this has caused many chest infections. I am due to have Botox injections in to my muscle via an endoscope . I feel lost and hopeless. What do you suggest I do to get my life back on track. I have had to take ill health retirement I had been a nurse for 24 years 20in a&e and th last 4 I spent as a school nurse. I miss my old life and the person I used to be. Sorry this is such a gob full but I don’t know what to do , any advise?

Hi Stifflady, goodness what a hard time you’ve been having.

Firstly, I think you have made a huge leap forward by realising that you are not going to get better (of course I might be wrong here as you are not diagnosed, but I think you are realising that this is not going to go away). You have been waiting for 3 years for your old life to come back to to be the person you once were… well, I think if you can now accept that it isn’t going to happen you need to make some very big changes to get a life back. No, it won’t be your old life, but it will be a life, and a life much better than staying at home everyday in pyjamas.

The oesophageal achalasia sounds absolutely horrific and that would be enough to depress anyone. However Botox injections can make a massive difference, and if you can get that under control it will make a big difference. Good luck with that. When are you starting the treatment?

You say you have a carer for personal hygiene, but seems to me you need much more than that. Are you getting all the benefits you should be on? (for instance you should be on the ‘high’ amount of DLA for both care and mobility). If you could have carers come in to help you get dressed and help you get OUT it would be a positive change.

You should have either a wheelchair or a mobilty scooter and be getting out of the house at least a few times a week. Sitting around in your pyjamas is not a good way to live… as you know. You need to be going out even if only to the shops… but with wheelchair and taxi’s you could go even further (when was last time you went to a cinema or an art gallery? With a wheelchair or scooter these things ARE possible).

What is you living situation like? Could it be improved? Have you any family or friends that can help you to re-organise your life?

Are you still in touch with the social worker who helped get you the carer? If so contact them and say that you need more help. If not, phone social services and say you need to see a social worker.

How far has the neuro got toward a dx? Have they done an MRI scan of brain and spine? Have they done a lumbar puncture? If not, contact the neuro and get an appointment. You really need to get a dx to find out what’s going on, and if it is PPMS, to accept it so you can move on with your life.

I have PPMS and believe me I know how hard it is to motivate yourself to even get any of this stuff moving forward… but I think if the Botox works (please God) you will find a bit more energy to get some of this stuff organised.

If you can get yourself into a frame of mind where you can accept that your old life is not coming back, but that you can, like many many other disabled people, create a new life for yourself, life WILL once again be worth living.

Please keep in touch and let us know how you’re doing. Don’t give up!!!

Pat x

What a brilliant reply from Pat. I have nothing to add other than (((((hugs))))) for all you’ve been through and are going through, and my very best wishes that today is the day that your life begins to change for the better.

Karen x

Thanks for your reply. I start my Botox in 2weeks so fingers crossed it works. I’ll keep you posted ,

Hello Stifflady. You sound like you are having a terrible time. I can’t add anymore to Pats brilliant advice. Do you still have a social worker who could maybe looking into an increased package of care? It sounds like you need extra support to meet you needs. I realy hope that the Botox works for you, it must be dreadful for you. I really hope that your neurologist can move forward and get the answers that you need and deserve. The support on here is so valuable, we can’t change things, but the advice is great, so keep in touch. Sending you ((((((hugs))))) Ppx

Hello lovely xxxx I cried when I read your post xxxx you have given so much caring in your life - I wish it tenfold back on you and that you get the relief you so deserve xxxxxjenxxxxxx

Hello Stifflady

What a dreadful time you’ve had. Pat’s given you some thorough and excellent advice but wanted to pass on my best and wish you good luck for your botox treatment.

Realising things might not improve is the first step but its a major first step. Hopefully you can work towards getting a better quality of life than you have been doing now you’re coming to terms with this.

Fingers crossed - let us know how you get on.