😢
I am writing this with tears rolling down my cheeks. I know there are people far worse off than me but I honestly don’t know how much longer I can go on, I am a shadow of my former self. I put on a front to everyone but then when I am home my husband and my children and the ones that see the real me.
Sorry this is going to be a long one.
I have had many ongoing symptoms and tests and for quite a considerable time. I had a brain MRI done by the NHS and they reported lesions and delimitation disease and a fast track was done to neurologist.
I saw an locum NHS neurologist who was incredibly rude and not professional at all and from then I went private.
I went to see Dr Lilly at the Spire who said my examination etc was pointing in the direction of primary progressive MS but he could not give me a formal diagnosis until I had a lumbar puncture and he did not want me to pay for that privately due to the cost, he also said the MS treatment is postcode located and he does not cover me under the NHS so he has sent me back to my local MS service.
I have had a lumbar puncture which was negative and a further brain scan which has further changes but in the neurologists words the changes were not significant enough, this neurologist said it was pointing in the direction of RRMS but due to the clear lumbar he could not diagnose and sent me on my way for another 6 months. Although I have to see the MS nurse inbetween.
They now think I have had optical neuritis so waiting for this test. He said he thinks I am having migraines too so has put me on toprimate 4 x daily, I am also taking Gabapentin 300mg 3 x daily, citolpram 30mg and double dose vitamin d.
Cognitively everyday is a struggle, i constantly ache, I fall over, I’m dizzy, I have headache, the fatigue is through the roof, I stumble over my words (I sound like I have had a drink) I have muscle twitches in my legs.
I am only 42 and I should be able to enjoy my teenage children but I honestly feel like they would be so much better without me, I feel like I am holding them back, I feel like they have to make allowances for me. I really have had enough
Take it one day at a time and believe me ….no one is better off without you ….it’s time to make you the priority and except help for your new way of living ,keep your chin up and keep on keeping on
As a 41 year old dad myself I know what it feels like to have to watch your children leave the house to go and do hobbies or sports and you can't go, I often have our daily catch-ups after school while I'm lying on the bed exhausted when really I should be picking them up from school or playing games with them etc. I miss out on a lot of things. I also stumble around the house and remember that only a few years ago I could drive my new VW campervan and then climb mountains or ride my mountain bike and go on long walks with my dog. It's tough. But what you don't realise is your kids and your husband love you as much in your current state as they did before. They may even love you more realising how precious life is and every little moment you get to share. Depression has been an annoying monkey on my back my entire life. There have been times where I have thought there is no way out and that it would not be humanly possible to ever climb out of that pit of hatred and worthlessness. But everytime I did. At first it took months, then it took weeks and now I can usually kick it's ass in 48 hours. That's my current record. It's a bit like an ongoing boxing match. You learn it's weaknesses and where to hurt it and how to heal yourself quicker each time you go to blows. I can't tell you how long it will take and a big part of depression is just allowing some of the feelings to do their thing and wash over you. But I can promise you that you will feel better one day in the near future. No matter how worthless you feel there are other people around you that don't care that you can't do as much and need you to be there. So keep fighting. Your allowed to feel like crap and many people on here will tell you that you are not alone.