Hi,
I’m just feeling really low at the moment, and can’t see things getting any better any time soon. I was newly diagnosised in March-June (initial in March, confirmed in June) time following a case of ON and then confirmed with an MRI scan (plus had had some brain inflammation on a previous MRI a couple of years back). My neuro that I’m under when I saw him in June basically said not to worry, that it would probably only be mild (given my age, sex, lack of symptoms over the past 2 years, and then starting with the ON), although I was a little more conserned and did ask about dmds (I’d had some vertigo not long before I saw him, and the previous year had had a very brief episode of double vision, but he didn’t read anything into either of these incidents). He send that I didn’t need referal to an MS nurse to discuss them (or anything else for that matter) and that’s where things were left. Only a week or so later, I started on placement (student nurse), and about a week into that I started with light-headedness, and numbness in my right leg. This past after about a week or two, but was very scary at the time. I did go to the GP about it but got the go old ‘well what would you like me to do about it’ - helpful. Then about 3 weeks after this, I started with double vision, fatigue (I’d had a very brief episode of fatigue just before the light-headedness started), severe nausea, and really horrible headaches (brain stem inflammation I’m told). I’ve basically been living off Co-codamol (which I have for problems with my back) just to get me through my placement, but I’ve still been feeling absolutely dreadful to the point of tears many days.
I went back to the GP (a different one this time), who referred me back to the neuro. I saw him in my last week of placement (useful), and he basically said that yes now he thought that it was a good idea to refer me to the MS team and look at dmds (which it turns out he doesn’t have a clue about as it’s not his sub-specialist, so really can’t help). So I now have to wait under at least Nov-Dec time to even see a neuro who knows anything about MS, and only after that can I have contact with an MS nurse who may be able to help me with symptom management and pain relieve (great - thanks a bunch! And in the mean time I’m supposed to do what exactly?). He gave me some anti-nausea tabs, and wrote a script for some Steriods, though told me to wait another week before cashing it in as he was sure the relapse would have probably resolved by then (plus Steriods work better at the start of a relapse apparently rather than further in - what a shame no one was prepared to give me some sooner). As you may be able to guess, I’ve now had to get the Steriods, which don’t appear to be having much of an impact on things (5 day course - 3 days in, of Medrone, 100mg * 5 per day?).
I asked his about anything for the fatigue and general tiredness I’ve been getting which seems to be getting progressively worse, and it was basically ‘sleep, take the day off’. What a happy bubble he lives in. I can’t get the uni to make any accommodations, and they certainly won’t let me just take days out of placement as and when. When I last spoke to my tutor, and tentively mentioned that things weren’t to great with me at the moment, she simply said ‘what about taking a year out, come back when your health is sorted’ (hmmm…, like MS will magically get better or go away) - like she just wanted to get rid of me / the problem, and I hadn’t even gone into what was wrong. They are extremely unsupportive, and really don’t like problems or having to make accommodations - they like the easy life.
In terms of home life, well it isn’t even possible for me to take time out. Until now, it’s been me providing support and help for my dad, who struggles to look after himself due to his mental health problems. He is not a well educationed man, has very big problems (due to his severe depression) with taking on responsibility including just for himself let alone anyone else, and spends most of his time just burying his head in the sand shutting things out (normally can be found on his laptop on FB). He also lost his wife (my mum) just over 2 years ago, and hasn’t even begun to move on from it. He lives in the South (as do I) at present, but has been clinging on to moving back up North closer to his family (his sister in particular) ever since my mum died. His house is in such a state (and I’ve neither been around nor looking back had the energy to help him sort it, certainly over the past year), that nearly nothings been done. However, oddly enough, as soon as I’ve had this diagnosis, he’s asked his sister and broher in law to come down and help him get it sorted so that he can move. It should be sorted within the next month or so, and he should have a place I would or thought by Christmas (he already has people interested in his place).
My work options where he’d be going are nearly none existant (Blackpool - one of the highest unemployment rates in the country), and he’s made it very plain that if I move in with him I have to pay him full board so will need full time work. He doesn’t seem to have any consept that this may not be possible for me, or at least not all the time, which will make finding a job really very difficult especially in somewhere like Blackpool. He’s also said that he thinks a lot of it is just in my head, that he can’t be responsible for me and I need to just get my own place and get carers in (I’m not even at that stage, but I may not be able to maintain my course at the moment, and if I can’t do that then I certainly won’t be able to maintain a full time job), that he needs to build himself a new life, and that he doesn’t understand MS (not that he’s shown any signs of wanting to - I’ve tried explaining it as best I can, and pointing him to sources of info, but he doesn’t look because that would mean facing things).
I have a sister, but she too has washed her hands of the situation - says it’s my dad’s department if things get that bad as he’s my parent. She does seem to be a little more aware of how bad things could get (and I am basing things perhaps a little on a slightly more worse case scenerio since things haven’t gotten off to a great start nor do they seem to be improving), but doesn’t seem to have any options in regards to what practical help may be able to be offered if needed. I can understand her a little more since her family struggles to put food on the tablet most weeks, lives in a 2 bed house (she has a daughter), and both her and her partner work full time, so I don’t know how they could help in a practical sense either.
I am in agreement with my dad in that I don’t want to live with him - I don’t see it as being a viable solution for either of us. We’ve had quite enough years of horrible arguements and falling out for me to know that this would not be good. But I’m lost for alternatives (I may be looking a bit down the road, but equally, I couldn’t do another placement like the one I just did so perhaps not, and I think that I’ll have less support on this placement).
I’ve tried to get in contact with my local MS branch,but have heard nothing back from them either. I just feel like I’m constantly hitting brick walls - I have no answers (I don’t even know what type of MS I have), no help with managing the condition, and no options for the future. I’ve looked at benefits, and I’m not entitled to them either (which was again my dads answer - if you’re sick, then you’ll be able to get benefits and carers - his world is very black and white). I just want someone to give my some practical and realistic options, not dumb advice that will never work in the real world. Has anyone been in this situation? Can anyone help me please?
Thank you so much,
One very stressed out Forest