Living with someone who has an auto-immune disease (or should I say an invisible illness) is something I cannot describe with any degree of clarity anymore. There is nothing straightforward about it and sometimes you feel so helpless about everything that you end up just wanting to run away from it all. Frustration, anguish and despair are the defining characteristics of dealing with this condition. Most people I have spoken to do not know what M.E is when you tell them.
That isn’t a good start…. bring on the isolation.
My husband was unfortunately struck down with glandular fever about 5 years ago and it was only after this illness had improved that he started encountering a myriad of symptoms daily that seemed to have no apparent reason or explanation. The problem with M.E is that the symptoms could represent other serious illnesses so we don’t know what to think or expect. I cannot tell you the amount of times we have had to call 999 as some of the symptoms have been so frightening.
There are 250,000 people living in the UK with M.E. That is a lot of visits to the doctor with no clear outcome. A lot of pleas for help with doctors looking at you wondering if you are a hysterical hypochondriac or not. Test after test, after test, after test, and nothing. In the end, you begin to doubt even your own sanity. ‘Perhaps it really is all in his head. Perhaps he just thinks he’s ill when really he is just stressed.’ The doubts go on and on…just like the tests.
‘Oh your husband is just anxious.’ No, he isn’t. To hell with anxiety. Not every patient who comes through the door of the surgery is anxious. He is anxious BECAUSE he is feeling so ill. As soon as a doctor says this to me, I feel my blood pressure rising. It makes me so angry that nobody understands or can take it seriously. I have seen his symptoms change daily. Sometimes hourly. Swelling joints. Chest pains. Blood shot eyes. Tremors in the limbs. Hot sweats. Tremendous spikes in blood pressure. Rashes that come and go overnight. Brain fog. Feeling dizzy and spaced out constantly. Moderate to severe exhaustion with hardly any exertion.
Sometimes he will be completely calm and at ease with himself and suddenly out of the blue he will experience a massive attack of dizziness, racing heart beat and have pains all over his body.
Yes…all in his head of course.
What hurts me most of all is seeing a man who desperately wants to get on with his life, who wants to be his normal self again and is held back by some kind of disease that nobody understands. Not even I can truly understand it when he is at his worst. He describes it as one of the worst flu bugs you could ever have whilst simutaneously having what feels like a stroke. What can we do? I can only empathise as best I can and try and be as supportive as I can when he is experiencing a flare. Apart from that…I feel incredibly helpless.
One thing is for sure. Good health is paramount.
As soon as you lose it, you realise just how valuable it actually is. We appreciate the good days now more than ever before. Every moment of normality and peace is cherished. Every walk in the park, every meal, every day. The simple things.
Perhaps the cure to this awful illness is a simple one. We just need to find it which means people understanding and taking it seriously. Even after everything, we are still going strong together. Both working hard still and determined to make things better. That is amazing in itself despite the difficulty.
If you are one of those who have M.E or are struggling alone to support someone who is suffering with this illness, feel free to comment or send me an email and let me know how you are coping with it.